Hey y’all! I am doing SO much better today. That ER doctor really knew how to break the painful cycle I was in from the IVIG. He said that generally a high dose of IV steroids (the Solumedrol) for systemic inflammation and an IV NSAID (the Toradol) usually does the trick. But when that does not work, such as in my case, he then gives a small dose of a strong IV narcotic (the Dilaudid). The combo was exactly what I needed! Before those medicines, I couldn’t even move/talk. Afterwards, it was a HUGE difference and I am still improving today. So thankful my ER doc knew what needed to be done! I am also grateful that my hospital knows me so well and did not waste time when the perfume triggered an allergic reaction. (Again, not the woman’s fault. I can’t expect the whole world to not wear perfume for me lol, but that is part of why I wear the mask - To lessen triggering scents.) Thank you so much for all the support, prayers and encouragement. I am confident we will eventually figure out IVIG, but that is a something to tackle next week. Today, Judd and I are off to decide what to do about my feeding tube. Wish us luck, and I hope y’all have a happy Monday!
Chronically Jaquie i'm glad the meds worked. Shame it had to get so bad first tho. Keep on fighting and let's hope next round of IVIG will go better and you'll stay okay(ish). Lucky you had your reaction in the hospital so they could help you quickly.
I'm so glad they helped you and you are having a better day. Chronic illness sucks and seems to laugh when we think we have it figured out but eventually we will figure it out. Praying for you.
I really hope that tomorrow's vlog will be happier, I'm so sorry that you had to go through this, again. Al I hope for is that you made a decision that you're at peace of mind with💕💜
Glad you are feeling better today based on your pinned comment. I want to just let you know that I not only admire you for allowing strangers to come along on your adventures but I am so inspired by something that may seem small but I notice it in EVERY video: You always take time to thank ANYONE for ANYTHING they help you with, no matter how big or small that is. I've been meaning to comment on that but with the way you were feeling today you didn't have to but you still took time to thank family for just making your house have a little christmas cheer. Keep moving forward!
You are an amazing woman, Jacquie. Please don’t apologize when you don’t have the strength or the energy to report every last detail. You don’t owe us anything. Your main responsibility is to take care of yourself.
It's a compliment to you that your local ER staff clearly respects your medical self-knowledge and acts swiftly and appropriately when you have an emergency. They probably would have admitted anyone else. Also your perfume encounter reminded me that several years ago I was on a flight and a woman actually sprayed herself with perfume as the plane approached the landing. She basically gassed everyone aboard.
Sweetheart....you never have to apologize for anything!!! I am so sorry that you were so unwell again. You are a brave woman and you are a real trooper for staying so positive even when things get really bad. You are an amazing person...hugs to you and your loving devoted Harlow :-). C.
Oh Jaquie, while watching this video, I just wanted to reach thru the screen and give you a big hug. I could feel your disappointment, frustration and even your pain, lol. I take it this means I have come to care about you and your family a great deal and am very thankful that you have such a strong support system. My mom and dad live in the same city as I do too, and I don't know what I would do without them, as otherwise I am a single mom. It's hard. After reading your post in the comments here, I am so relieved to know that you are with Judd, in good hands, and able to get to your appointments, etc. I have my fingers crossed (which makes typing this very challenging, haha) that all goes well and you get the information you need either way, to make your decision about the feeding tube issues. Thinking of you, girl! xoxox to Harlow - she's a star! Heather🇨🇦
I know you still had a bad reaction...but the fact that you were able to have it treated and then got to go home the same day is amazing. Compared to the last time you had meningitis, this was so much shorter. From the outside looking in, it seems like IVIG is already making your body stronger. I'm so proud of you for sticking with this, and going boldly in the direction you need to go, and facing whatever comes your way.
I'm a new subscriber and I've fallen in love with your videos. It makes my heart so happy that through these struggles with your health, you have such an amazing support system. Your parents and godfather decorated your house, your mom is available to take you to the hospital, Harlow not taking her eyes off you, and of course your wonderful husband. You are so loved!
I have rheumatoid and inflammatory arthritis and can end up crying from the pain & situation. Then I remember what you and Mary Frey have to go through, though the problems are different. You are such a trooper Jaquie and you have a right to cry. I just amazes me how you don't do it more often. Keep on marching girl. We are all praying for you!!!!
I haven't been watching your vlogs for long, but I went back and watched several months because I really enjoy your videos. I'm constantly impressed by your honesty and the way you show the realities of your life with a chronic illness. I'm really sad to hear IVIG didn't work out well for you, and I hope you get better fast. It's also a shame that it always seem to be two steps forward, one step back, but hopefully you and your doctors will continue to find the best treatment plan for you.
living in a bubble. I have EDS and MCAS as well as other chronic illnesses. I feel like I live in a bubble. I have a room separate from everyone that I spend the majority of my time in. 2 heavy duty air purifiers in there. Black out curtains for when my migraines are really bad or when I'm highly reactive to light. I only leave the house for doctor's appts most of the time. I'm getting ready to travel to SC (I'm in NC) to see a neurosurgeon who specializes in treating prior with connective tissue disorders. I have CCI, and possible Chiari. My newest type of headache is pressure from inside my head. I've never had such horrible pain. You are so blessed to have an ER team who understands what you need most of the time. I get yelled at by nurses and ignored by doctors because they don't understand EDS or MCAS. I really hope you are feeling better and enjoying time with your family today!
Glad you are feeling better today! I am sooo grateful for dilaudid! One of many medications I take several times a day for my whole body CRPS. Watching myself deteriorate over the last 2 1/2 since a work accident and needing a wheelchair now is so hard, but has been made so much better when I hear about other people’s chronic illnesses and how they handle the pain and limitations and still be happy. Thank you so very much for allowing us into part of your life. 💕
Hey, I have had days like this. You are an amazing woman and you help me get motivated. You got this!!!! Sending lots of hugs. Tears can be healing. Chronic pain is a grieving process. Stay beautiful. And may god bless you always.
So sorry you have felt so horrible today!! Hang in there! We are all rooting for you and many of us understand and can relate to days that don't go as we had hoped. I hope you feel better and don't get any re-bound migraines from your IVIG side effects. I'm so glad they were able to provide you with some much needed relief! ((hugs))
Aww, Honey. I'm so sorry you went through that. Diladid to the rescue! Your place looks so nice! Great to see Dad and hear Momma. You know, when you're so sick, you just really want your Momma there. Take care of you, Love, and get some rest. Hi Judd.
So sorry that the chronic illnesses are really not playing fair :( You don’t owe us any explanation, so thank you for filling us in so well and helping us not worry x Really hoping that you get the answers you want today, and that Tuesday is the treat that you deserve!
Honestly, you have my full respect: Your body makes life a real struggle but you still manage to survive. But in addition to all of those bad symptoms, you keep editing and uploading your Vlogs which is surely not a negligible effort! Merry Christmas everybody 😀
Every time I listen to you, I truly count my own blessings! You are such an inspiration! May God give you a wonderful time with your family sweet lady!
I had the same issue with ivig. I now get dilaudid as a pre med with benedryl solumedrol and Tylenol. I now have min issues. Feel free to contact me if you would like to about my ivig battle anytime day or night. I think support is very important. I also have the allergy issues. I feel like we have a lot in common
so glad you're doing much better today Jaq, and I hope you get things cleared up at your appointments to help you make a more confident decision about the feeding tube. hope you and Judd have a wonderful day tomorrow too, you both deserve the break after the last few days
There are, unfortunately, some people who are not supportive and think she is "faking" her illnesses for attention. She actually had an Instagram bully who I gave a good tongue lashing to because she was stalking the page and posted everytime Jaquie made a new post about how she should stop acting like she's sick. People can be such jerks...
But unless you have a chronic illness it is hard to understand. People think I'm a hypochondriac because I have so many things wrong with me but I look like the perfect picture of health. Even my pulmonologist says that and he knows how well my lungs function. It can be frustrating and that's why I prefer to keep company with others who know the difficulties of such challenges.
Jacquie, I know exactly how you feel. I go through the same thing all the time and it hurts that my family members do not understand why I'm fine 1 day and the next day is bad. It helps to have the kind of support that you have. Hang in there.. You are a strong woman and have an excellent husband and family to help you. I pray that one day you will have more better days than bad ones. Take care. I admire your determination.
Can't wait to see what adventures tomorrow holds! I'm so sorry your Sunday was so miserable!!! I'm praying you found peace in your decision concerning your feeding tube! You are so so so strong and an inspiration to many! Let's keep moving forward!
So happy you are feeling better. I know it doesn't seem fair but you do such an awesome job of coping. I watch your videos everyday. They are usually the first one I watch. Harlow is fantastic. Judd's mustache is growing on me but I still think he looks better without it. Keep on keeping on.
I really enjoy your vlogs and adventures!! They have been a great study break from my nursing finals! Also, I do learn things from your vlogs, about medications and it's really helpful for my studies. Thank you so much and I will pray for you and your IVIG!
If you could read this I would be grateful. And mention it in the vlog. Most people who vlog try and upload daily, they are all about numbers but some such as you don’t care about the numbers(well you do but only to get the awareness out) I’m soo happy that you push through everything each day and upload it must take an incredible amount of courage and stubbornness and knowing your body to be able to do that. I would totally understand if you took months off to make sure your completely heathy. Some like RomanAtWood take days off for the sake of his family and we all respect that.
I understand the difference between the migraine and meningitis headache pain. When I was a young woman I had horrible migraines. One day I developed the most severe head pain and was misdiagnosed and mistreated by the ER. After days of misery I saw a neurologist and was hospitalized with viral meningitis. For me, as I got older the migraine pain has left. I still have the aura, usually light triggered, but no pain. Perhaps that can happen for you and your migraines. God Bless you. Tomorrow is going to be better.
Dear Jaquie, I’m sending you a little note from far across the pond; of well wishes and warm fuzzy energy to make you feel a little better very soon. Thank you for being you 🌼🌸🌹
Glad the er people managed to fix you up again! And your family were so sweet, decorating your living room for you! It's always frustrating when things don't go as planned. Setbacks can be incredibly discouraging. Today I had a MASSIVE meltdown after like a month of being alright and it kind of ruined my afternoon, since I planned on studying for my exams next week. Now my body is all flOP and my brain also and it sucks. At least I managed to organise my notes. It's not studying but it's..something.
Bless your heart Jaquie. I'm so sorry you went through that. I have migraines, so I know they are horrible, but I can't imagine how bad you must have been hurting. I'm praying that you continue to feel better REAL SOON! Also remember that God will not allow us to go through more than we can handle. One of my favorite sayings says, what doesn't kill us makes us stronger! Love and Prayers for you and your family.
Good luck on your doctors appointments today! Hope it’ll all go well. So glad you’re starting to feel better! Tuesday sounds like it’ll be a fun day for you guys! Enjoy every bit of it! Sending lots of love and prayers!❤️🙏🏼🐾
Hope you have a better day today! Last Saturday I had to go the ER. I asked for a mask and when I got it I laughed and thought of you! It was a Disney mask! Thanks for making me smile on a crappy day!
I am always impressed that no matter how you feel at the moment, your hair still look so nice and well treated. It must be taking a lot of spoons to keep up with it but judging by appearance it is well worth it! Sending strength, hope you are feeling better now and all appointments are going smoothly.
bless your sweet heart, praying you continue to improve and feel better. and dont apologize, we all love going on adventures with you, Judd and Harlow... you're doing the best you can even when things are rough for you. you're more of an inspiration than you realize...even to someone who doesn't have any chronic illnesses. Hoping tomorrow is a better day for you!! :)
So glad the ER knew exactly what to do to help you. Touching Harlow after she is exposed to allergens does not affect you because she is amazing and they fall right off of her. 😃
Thank you for taking the time to explain everything to us even though you are still recovering from what happened! I hope your appointments go well and whether or not you make a decision about your feeding tube today, you know what's best for you. Some choices just aren't easily made.
Im so sorry you had a bad day, but your spirits are stronger than your illness and it is so inspiring to see that you are staying positive. Sending my love ❤
we love you jaquie. things will get better, everything comes in waves. im sorry that you had to deal with this. im always so impressed by how positive you are and how you use your faith to uplift you. if i were in a similar situation i would be so lost. i wish i could get you a christmas present, so instead ill just send you prayers even though im not religious. good luck with your health.
Sorry you’ve been going through extra hard times. Remember with IVIG they have been saying all along it can get worse before it gets better, and I think your reactions to the IVIG are a sign that your body is working overtime with the medication to try to get better. You’ll get through this even if the journey is hard!
Stay strong. I know that your doctors will find something that works for you!! I’m so glad you have your family there for you and to help keep you strong!
I'm sorry you had such a bad reaction and I hope you feel better soon. I also hope you find the best combination of treatment. Take care!!! Loads of love and good wishes!!! Stay strong!!!
It made me happy to see you have a little plushie to take to the hospital with you. I’m an “adult” and I’m bringing a plushie to my spine surgery. We’re currently looking for my Snowbaby (had her since I was 5 and she’s been with me through all my medical issues). If not, I’ve found her clone on Amazon or my mini Deadpool :). I hope you feel better or at least some what human soon. ❤️
Glad you are feeling better, hopefully this was just a minor set back....which happens a lot as you know with chronic illness sending hugs and prayers to you....
I'm so glad that you are feeling better! I'm so sorry that there was a set back! I hope that you can figure out your feeding tube! Sending you the best! Love you Jaquie! Get well soon!!
Gosh it was so rough for you... I am hoping that you are doing well! I hope moving forward you can find a way to have your treatments hurt you less! You are definitely a trooper. 😊
I'm dealing with a very bad migraine (at least in my record of migraines) today and feeling nausea. It would go on for a while then stop then start... I don't know the cause. But I'm just watching your video trying to pass some time. Seeing the word "discouraging" in the title, it reminds me of a story my godmother told me about the time she was very sick. She couldn't walk at all and everyday they had to do some painful treatments for her. Everyday they would move her bed across this hall way where she could see a restaurant, and people going in and out of it. Everyday she would think to herself wondering when she would be able to go to that restaurant. To her at that time, her treatment had no end, everyday was the same, and she wasn't sure if she would ever get to go to that restaurant. She tells herself everyday "maybe tomorrow." One day that tomorrow really came. The hospital released her and she the first food she ate outside was at that restaurant. She would tell me the process is always the endless, challenging and discouraging part, but if we keep believing in ourselves and do what is best for us, the end reward will be far greater than the process.
I am happy ypu feel better. All night last night i got very sick but your videos help me as my drs are looking for a Dysautonomia dr. So no meds to help in my small town. So i do it all on my own. :) thanks hun for the help
I was feeling the best I have felt in a long time yesterday. I called my mum and told her, and the first thing she said was "don't get discouraged when you back track. It will happen, but you feel overall better, and that's what counts. you will power through"
I think if you rest for a day or 2 after IVIG, you’d be able to get back to your normal a little bit quicker. Even if you feel up to running errands and whatnot. I know personally if I don’t rest, I just end up feeling worse. Side effects can happen up to 72 hours afterwards. I’m glad you didn’t end up having to stay in the hospital and that you were able to go home after getting some medication.
I completely understand! Migraines make my Gastroparesis worse, vomiting makes migraines worse. You are strong, and you can get through this! You had a set back, not your fault.
Oh honey, we completely understand that you can't answer comments. Your health is the most important thing. We will support you in your good days and in your bad ones. I'm so glad the doctors could give you some relief. I hope you get to feeling better soon
This is part of the reason I try to understand why my doctors don't want to treat my auto-immune disease. Normally the go-to treatment is IVIG, but they warned that they believe the potential risks outweigh the potential benefits. They described a lot of what you just went through, but said I could go through all that and still see no improvement, and potentially get worse. I'm wishing you good thoughts, and hope your doctors appt's went well.
I don't know what to say other than i am thinking of you and that i am glad that your symptoms were dealt with so well when you reached theER. Hope your appointment with the IVIG Doc goes well and that you are able to make a decision that you are able to at least be confident about x
Hello. This is the guy who has a Golden Retriever Service Dog as well. I'm wheelchair dependent and also I have Fibromyalgia and CRPS both lower legs. I'm sorry to hear of you having so much trouble with you IVIG. Technically speaking I get IVIG treatments and thankfully don't have any side effects. But my pain management doc has told me if I were to have a severe reaction such as you are ,then he would take me off the treatments because such side effects can be as you know extremely dangerous. If I were you I would seek a second opinion from another pain management doc. Because it seems you are suffering from the treatments setting you back in a massive way and treatments are supposed to help and not make you feel way worse than before you had the treatment. I really hope you read my comment cause I'm going through very much the same treatments so I understand what is expected of the treatment. Or maybe talk to your current doctor being very honest with him of how the IVIG treatment is effecting you so badly. I pray you get some relief my friend. From one Pain Angel to another. Gentle hugs. Cheers
Hello Horologist Extreme, I believe she is very happy with her team and doctor. for her even though the side effects are really bad the good can be worth the few bad days. Every treatment will effect people definitely we are all happy your ivig works well for you with minimal side affects. good luck
I'm sorry :( I hope you and Judd have a good day today! maybe 15 is all your body can handle. It sometimes feels like it, but getting better is not a race.❤️
I'm not sure if it is available in your area, but here in Australia we have a manufactured IVIg product that causes a lot less side effects. It is not a blood product as it is purely manufactured and is said to be much easier on the body. It is called Privigen and I believe it is imported to Australia from America xx
Hope you get to feeling better! I seriously hope you can figure out a way to keep using IVIG without side effects! Lots of good thoughts and wishes sent your way!
I hope you start feeling better. Trust me I know how disappointing it can be to be doing everything right on your end but something still goes wrong and you end up in the er. But normally I am not lucky enough to get to go home. I usually end up in the hospital for a minimum of 3-5 days and usually it's more like 7-10 days. And I almost went to the er yesterday myself but thank God I started feeling better and was able to wait.
Im so sorry that happened. I hope that you can get better soon. Im glad thst you have family that can be there when they can. Its a blessing that your mom can be down the street to help you out. Keep your head up. If you need to take a break and juat focus on you. Dont worry ablut vlogging. I know you enjoy it but if you feel like you need a break take one please.
Dear Jaquie, I am so sorry that the things you need for your quality of life sometimes cause you trouble. I am so sorry that your feeding tube kinked again....that the hospital didn't have the right equipment when you went to have it replaced....and that IVIG which has the potential to help you SO MUCH also makes you so ill. I am praying for you now.
Hope you get well soon jaquie and you dont need to explain yourself when your not well and dont have the energy to especially after IVIG Im sure everyone would understand jus stay strong your a lovely person enjoy tomorrow :) god bless you and your family
Jaquie, How are you so alert in the vlog with that cocktail?! I was given a small dose of Dilaudid and man i was so out of it that started singing! Lol. Glad to hear you're feeling better!
Unfortunately we can do all the right things but when we have chronic illnesses we still have chronic illnesses. Or if we have chronic pain we still are going to have chronic pain even if we do everything just right. I am so sorry that you're having such a hard time I can see the struggle and the disappointment in your face and how tired you are. I hope you start feeling better soon and as always I will see you next time thank you so much bye
Please take care and i hope that you are feeling a bit better now. You are in my thoughts and prayers and i totally understand what you mean when you say that medical stuff is getting to much. I hope that you both enjoy your day off and enjoy your adventure. I am so sorry that you had a reaction to the ivig again but hopefully you can talk to your doctor to see if you can maybe go down a dose or something. Just take care and God bless you both lot's of love from me kelli xxxxxx
You are awesome. Don’t ever give up. Keep working towards being good. And remember this, “There is no elevator to success, you have to take the stairs.” “Also, What doesn’t kill you makes you stronger” I️ love quotes, I️ have about a million more if u want
@chronicallyJaquie I was wondering, I know you are feeling really bad lately, but are you still doing the patreon stuff? like the parties and everything? You never mention them any more....
Thank you for sharing your life to us... I always look forward to your next vlog.. Your positive outlook inspite of your health issues does help me deal with my situation... be safe always. God bless.
Hey y’all! I am doing SO much better today. That ER doctor really knew how to break the painful cycle I was in from the IVIG. He said that generally a high dose of IV steroids (the Solumedrol) for systemic inflammation and an IV NSAID (the Toradol) usually does the trick. But when that does not work, such as in my case, he then gives a small dose of a strong IV narcotic (the Dilaudid). The combo was exactly what I needed! Before those medicines, I couldn’t even move/talk. Afterwards, it was a HUGE difference and I am still improving today. So thankful my ER doc knew what needed to be done! I am also grateful that my hospital knows me so well and did not waste time when the perfume triggered an allergic reaction. (Again, not the woman’s fault. I can’t expect the whole world to not wear perfume for me lol, but that is part of why I wear the mask - To lessen triggering scents.) Thank you so much for all the support, prayers and encouragement. I am confident we will eventually figure out IVIG, but that is a something to tackle next week. Today, Judd and I are off to decide what to do about my feeding tube. Wish us luck, and I hope y’all have a happy Monday!
Chronically Jaquie i'm glad the meds worked. Shame it had to get so bad first tho. Keep on fighting and let's hope next round of IVIG will go better and you'll stay okay(ish). Lucky you had your reaction in the hospital so they could help you quickly.
You've got this! Good luck today!
I'm so glad they helped you and you are having a better day. Chronic illness sucks and seems to laugh when we think we have it figured out but eventually we will figure it out. Praying for you.
Chronically Jaquie- yay atleesed you feel better!!!!
I really hope that tomorrow's vlog will be happier, I'm so sorry that you had to go through this, again. Al I hope for is that you made a decision that you're at peace of mind with💕💜
Glad you are feeling better today based on your pinned comment. I want to just let you know that I not only admire you for allowing strangers to come along on your adventures but I am so inspired by something that may seem small but I notice it in EVERY video: You always take time to thank ANYONE for ANYTHING they help you with, no matter how big or small that is. I've been meaning to comment on that but with the way you were feeling today you didn't have to but you still took time to thank family for just making your house have a little christmas cheer. Keep moving forward!
You are an amazing woman, Jacquie. Please don’t apologize when you don’t have the strength or the energy to report every last detail. You don’t owe us anything. Your main responsibility is to take care of yourself.
It's a compliment to you that your local ER staff clearly respects your medical self-knowledge and acts swiftly and appropriately when you have an emergency. They probably would have admitted anyone else. Also your perfume encounter reminded me that several years ago I was on a flight and a woman actually sprayed herself with perfume as the plane approached the landing. She basically gassed everyone aboard.
Brenda Shelonko that airplane story sounds like a nightmare!
Sweetheart....you never have to apologize for anything!!! I am so sorry that you were so unwell again. You are a brave woman and you are a real trooper for staying so positive even when things get really bad. You are an amazing person...hugs to you and your loving devoted Harlow :-). C.
Oh Jaquie, while watching this video, I just wanted to reach thru the screen and give you a big hug. I could feel your disappointment, frustration and even your pain, lol. I take it this means I have come to care about you and your family a great deal and am very thankful that you have such a strong support system. My mom and dad live in the same city as I do too, and I don't know what I would do without them, as otherwise I am a single mom. It's hard. After reading your post in the comments here, I am so relieved to know that you are with Judd, in good hands, and able to get to your appointments, etc. I have my fingers crossed (which makes typing this very challenging, haha) that all goes well and you get the information you need either way, to make your decision about the feeding tube issues. Thinking of you, girl! xoxox to Harlow - she's a star! Heather🇨🇦
I know you still had a bad reaction...but the fact that you were able to have it treated and then got to go home the same day is amazing. Compared to the last time you had meningitis, this was so much shorter. From the outside looking in, it seems like IVIG is already making your body stronger. I'm so proud of you for sticking with this, and going boldly in the direction you need to go, and facing whatever comes your way.
I'm a new subscriber and I've fallen in love with your videos. It makes my heart so happy that through these struggles with your health, you have such an amazing support system. Your parents and godfather decorated your house, your mom is available to take you to the hospital, Harlow not taking her eyes off you, and of course your wonderful husband. You are so loved!
I have rheumatoid and inflammatory arthritis and can end up crying from the pain & situation. Then I remember what you and Mary Frey have to go through, though the problems are different. You are such a trooper Jaquie and you have a right to cry. I just amazes me how you don't do it more often. Keep on marching girl. We are all praying for you!!!!
I haven't been watching your vlogs for long, but I went back and watched several months because I really enjoy your videos. I'm constantly impressed by your honesty and the way you show the realities of your life with a chronic illness. I'm really sad to hear IVIG didn't work out well for you, and I hope you get better fast. It's also a shame that it always seem to be two steps forward, one step back, but hopefully you and your doctors will continue to find the best treatment plan for you.
living in a bubble. I have EDS and MCAS as well as other chronic illnesses. I feel like I live in a bubble. I have a room separate from everyone that I spend the majority of my time in. 2 heavy duty air purifiers in there. Black out curtains for when my migraines are really bad or when I'm highly reactive to light. I only leave the house for doctor's appts most of the time. I'm getting ready to travel to SC (I'm in NC) to see a neurosurgeon who specializes in treating prior with connective tissue disorders. I have CCI, and possible Chiari. My newest type of headache is pressure from inside my head. I've never had such horrible pain. You are so blessed to have an ER team who understands what you need most of the time. I get yelled at by nurses and ignored by doctors because they don't understand EDS or MCAS.
I really hope you are feeling better and enjoying time with your family today!
Cindy Hayes I hope you feel better. Also, I live in NC too! :)
Thank you! I love it in NC. I lived in CA most of my life. I don't ever want to live there again. I know many people love it there, though
Cindy Hayes Oh. I lived in Florida most of my life. I moved to NC about a year ago.
Cindy Hayes I feel so bad for you. Things will get better. :(
It will get better. I know it will. ❤
Glad you are feeling better today! I
am sooo grateful for dilaudid! One of many medications I take several times a day for my whole body CRPS. Watching myself deteriorate over the last 2 1/2 since a work accident and needing a wheelchair now is so hard, but has been made so much better when I hear about other people’s chronic illnesses and how they handle the pain and limitations and still be happy. Thank you so very much for allowing us into part of your life. 💕
Harlow is such a good dog, you have done really well with her and I hope you feeling better soon
Hey, I have had days like this. You are an amazing woman and you help me get motivated. You got this!!!! Sending lots of hugs. Tears can be healing. Chronic pain is a grieving process. Stay beautiful. And may god bless you always.
So sorry you have felt so horrible today!! Hang in there! We are all rooting for you and many of us understand and can relate to days that don't go as we had hoped. I hope you feel better and don't get any re-bound migraines from your IVIG side effects. I'm so glad they were able to provide you with some much needed relief! ((hugs))
Aww, Honey. I'm so sorry you went through that. Diladid to the rescue! Your place looks so nice! Great to see Dad and hear Momma. You know, when you're so sick, you just really want your Momma there. Take care of you, Love, and get some rest. Hi Judd.
So sorry that the chronic illnesses are really not playing fair :( You don’t owe us any explanation, so thank you for filling us in so well and helping us not worry x Really hoping that you get the answers you want today, and that Tuesday is the treat that you deserve!
Honestly, you have my full respect: Your body makes life a real struggle but you still manage to survive. But in addition to all of those bad symptoms, you keep editing and uploading your Vlogs which is surely not a negligible effort! Merry Christmas everybody 😀
Good luck Jaquie I’m thinking of you. As a EDS Warrior I know it can be hard.keep your head up you got this
Every time I listen to you, I truly count my own blessings! You are such an inspiration! May God give you a wonderful time with your family sweet lady!
I had the same issue with ivig. I now get dilaudid as a pre med with benedryl solumedrol and Tylenol. I now have min issues. Feel free to contact me if you would like to about my ivig battle anytime day or night. I think support is very important. I also have the allergy issues. I feel like we have a lot in common
so glad you're doing much better today Jaq, and I hope you get things cleared up at your appointments to help you make a more confident decision about the feeding tube. hope you and Judd have a wonderful day tomorrow too, you both deserve the break after the last few days
Who would dislike Jaquie’s videos?! They’re very educational and interesting! And Hippo is absolutely adorable!!!
There are, unfortunately, some people who are not supportive and think she is "faking" her illnesses for attention. She actually had an Instagram bully who I gave a good tongue lashing to because she was stalking the page and posted everytime Jaquie made a new post about how she should stop acting like she's sick. People can be such jerks...
But unless you have a chronic illness it is hard to understand. People think I'm a hypochondriac because I have so many things wrong with me but I look like the perfect picture of health. Even my pulmonologist says that and he knows how well my lungs function. It can be frustrating and that's why I prefer to keep company with others who know the difficulties of such challenges.
You are such a strong young woman , I also struggle with several disabilities , I pray that you feel better soon
Jacquie,
I know exactly how you feel. I go through the same thing all the time and it hurts that my family members do not understand why I'm fine 1 day and the next day is bad. It helps to have the kind of support that you have. Hang in there.. You are a strong woman and have an excellent husband and family to help you. I pray that one day you will have more better days than bad ones. Take care. I admire your determination.
Can't wait to see what adventures tomorrow holds! I'm so sorry your Sunday was so miserable!!! I'm praying you found peace in your decision concerning your feeding tube! You are so so so strong and an inspiration to many! Let's keep moving forward!
So happy you are feeling better. I know it doesn't seem fair but you do such an awesome job of coping. I watch your videos everyday. They are usually the first one I watch. Harlow is fantastic. Judd's mustache is growing on me but I still think he looks better without it. Keep on keeping on.
I really enjoy your vlogs and adventures!! They have been a great study break from my nursing finals! Also, I do learn things from your vlogs, about medications and it's really helpful for my studies. Thank you so much and I will pray for you and your IVIG!
If you could read this I would be grateful. And mention it in the vlog.
Most people who vlog try and upload daily, they are all about numbers but some such as you don’t care about the numbers(well you do but only to get the awareness out) I’m soo happy that you push through everything each day and upload it must take an incredible amount of courage and stubbornness and knowing your body to be able to do that. I would totally understand if you took months off to make sure your completely heathy.
Some like RomanAtWood take days off for the sake of his family and we all respect that.
I understand the difference between the migraine and meningitis headache pain. When I was a young woman I had horrible migraines. One day I developed the most severe head pain and was misdiagnosed and mistreated by the ER. After days of misery I saw a neurologist and was hospitalized with viral meningitis. For me, as I got older the migraine pain has left. I still have the aura, usually light triggered, but no pain. Perhaps that can happen for you and your migraines. God Bless you. Tomorrow is going to be better.
Dear Jaquie, I’m sending you a little note from far across the pond; of well wishes and warm fuzzy energy to make you feel a little better very soon. Thank you for being you 🌼🌸🌹
Glad the er people managed to fix you up again! And your family were so sweet, decorating your living room for you!
It's always frustrating when things don't go as planned. Setbacks can be incredibly discouraging.
Today I had a MASSIVE meltdown after like a month of being alright and it kind of ruined my afternoon, since I planned on studying for my exams next week. Now my body is all flOP and my brain also and it sucks. At least I managed to organise my notes. It's not studying but it's..something.
I’m sorry you had a bad reaction to your ivig, and I pray it gets better and you can have a fun day with your family.
Bless your heart Jaquie. I'm so sorry you went through that. I have migraines, so I know they are horrible, but I can't imagine how bad you must have been hurting. I'm praying that you continue to feel better REAL SOON! Also remember that God will not allow us to go through more than we can handle. One of my favorite sayings says, what doesn't kill us makes us stronger! Love and Prayers for you and your family.
Good luck on your doctors appointments today! Hope it’ll all go well. So glad you’re starting to feel better! Tuesday sounds like it’ll be a fun day for you guys! Enjoy every bit of it!
Sending lots of love and prayers!❤️🙏🏼🐾
Hope you have a better day today! Last Saturday I had to go the ER. I asked for a mask and when I got it I laughed and thought of you! It was a Disney mask! Thanks for making me smile on a crappy day!
I am always impressed that no matter how you feel at the moment, your hair still look so nice and well treated. It must be taking a lot of spoons to keep up with it but judging by appearance it is well worth it! Sending strength, hope you are feeling better now and all appointments are going smoothly.
💜 feel better . harlow is loving on you so much when you feel bad so sweet .
I hope you and Judd have a wonderful day out tomorrow!!
I'm sorry you have to go through this. You are such a strong and amazing person. I wish you well.
bless your sweet heart, praying you continue to improve and feel better. and dont apologize, we all love going on adventures with you, Judd and Harlow... you're doing the best you can even when things are rough for you. you're more of an inspiration than you realize...even to someone who doesn't have any chronic illnesses. Hoping tomorrow is a better day for you!! :)
So glad the ER knew exactly what to do to help you. Touching Harlow after she is exposed to allergens does not affect you because she is amazing and they fall right off of her. 😃
Thank you for taking the time to explain everything to us even though you are still recovering from what happened! I hope your appointments go well and whether or not you make a decision about your feeding tube today, you know what's best for you. Some choices just aren't easily made.
Im so sorry you had a bad day, but your spirits are stronger than your illness and it is so inspiring to see that you are staying positive. Sending my love ❤
we love you jaquie. things will get better, everything comes in waves. im sorry that you had to deal with this. im always so impressed by how positive you are and how you use your faith to uplift you. if i were in a similar situation i would be so lost. i wish i could get you a christmas present, so instead ill just send you prayers even though im not religious. good luck with your health.
I’m so sorry ur struggling today! Really glad u said u were doing better. Spending u spoons!! 🥄 🥄
Sorry you’ve been going through extra hard times. Remember with IVIG they have been saying all along it can get worse before it gets better, and I think your reactions to the IVIG are a sign that your body is working overtime with the medication to try to get better. You’ll get through this even if the journey is hard!
Often a good cry helps. Dont understand it... hope today is a brighter day
I know it helps me. I am the type of person who holds in my emotions. Sometimes, you just need to let them out and then move on with life. :)
Stay strong. I know that your doctors will find something that works for you!! I’m so glad you have your family there for you and to help keep you strong!
I️ love you so much!!!! My prayers are with your recovery and that IVIG can eventually help you with you battle against chronic illness!!😘
stay positive Jaquie!! we all have bad days you just have to keep moving forward!! sending love!
I'm sorry you had such a bad reaction and I hope you feel better soon. I also hope you find the best combination of treatment.
Take care!!! Loads of love and good wishes!!! Stay strong!!!
God bless you dear girl! You are a warrior. Gratitude AND strong warrior woman? Great combo!
I pray that you feel hopeful as you have given me hope. You are loved. ❤️ love,Pattie
It made me happy to see you have a little plushie to take to the hospital with you. I’m an “adult” and I’m bringing a plushie to my spine surgery. We’re currently looking for my Snowbaby (had her since I was 5 and she’s been with me through all my medical issues). If not, I’ve found her clone on Amazon or my mini Deadpool :).
I hope you feel better or at least some what human soon. ❤️
Glad you are feeling better, hopefully this was just a minor set back....which happens a lot as you know with chronic illness sending hugs and prayers to you....
I'm so glad that you are feeling better! I'm so sorry that there was a set back! I hope that you can figure out your feeding tube! Sending you the best! Love you Jaquie! Get well soon!!
We're all here supporting you and your family is there too!
Sending you a hug 🤗
Chronic illness sucks! Wishing you
Better health really soon!
Gosh it was so rough for you... I am hoping that you are doing well! I hope moving forward you can find a way to have your treatments hurt you less! You are definitely a trooper. 😊
I'm dealing with a very bad migraine (at least in my record of migraines) today and feeling nausea. It would go on for a while then stop then start... I don't know the cause. But I'm just watching your video trying to pass some time. Seeing the word "discouraging" in the title, it reminds me of a story my godmother told me about the time she was very sick.
She couldn't walk at all and everyday they had to do some painful treatments for her. Everyday they would move her bed across this hall way where she could see a restaurant, and people going in and out of it. Everyday she would think to herself wondering when she would be able to go to that restaurant. To her at that time, her treatment had no end, everyday was the same, and she wasn't sure if she would ever get to go to that restaurant. She tells herself everyday "maybe tomorrow." One day that tomorrow really came. The hospital released her and she the first food she ate outside was at that restaurant.
She would tell me the process is always the endless, challenging and discouraging part, but if we keep believing in ourselves and do what is best for us, the end reward will be far greater than the process.
Really glad that you are feeling better today!! Praying for a even better day for you tomorrow
I am happy ypu feel better. All night last night i got very sick but your videos help me as my drs are looking for a Dysautonomia dr. So no meds to help in my small town. So i do it all on my own. :) thanks hun for the help
Best of luck to you! I know it can be hard to find good doctors.
I’m sorry you had a setback, that really sucks. But your house looks very festive and it’s awesome that your family is there.
I was feeling the best I have felt in a long time yesterday. I called my mum and told her, and the first thing she said was "don't get discouraged when you back track. It will happen, but you feel overall better, and that's what counts. you will power through"
I think if you rest for a day or 2 after IVIG, you’d be able to get back to your normal a little bit quicker. Even if you feel up to running errands and whatnot. I know personally if I don’t rest, I just end up feeling worse. Side effects can happen up to 72 hours afterwards. I’m glad you didn’t end up having to stay in the hospital and that you were able to go home after getting some medication.
I completely understand! Migraines make my Gastroparesis worse, vomiting makes migraines worse. You are strong, and you can get through this! You had a set back, not your fault.
You are so brave and capable hugs to you during this hard time. God Bless
Oh honey, we completely understand that you can't answer comments. Your health is the most important thing. We will support you in your good days and in your bad ones. I'm so glad the doctors could give you some relief. I hope you get to feeling better soon
This is part of the reason I try to understand why my doctors don't want to treat my auto-immune disease. Normally the go-to treatment is IVIG, but they warned that they believe the potential risks outweigh the potential benefits. They described a lot of what you just went through, but said I could go through all that and still see no improvement, and potentially get worse. I'm wishing you good thoughts, and hope your doctors appt's went well.
I don't know what to say other than i am thinking of you and that i am glad that your symptoms were dealt with so well when you reached theER. Hope your appointment with the IVIG Doc goes well and that you are able to make a decision that you are able to at least be confident about x
Hello. This is the guy who has a Golden Retriever Service Dog as well. I'm wheelchair dependent and also I have Fibromyalgia and CRPS both lower legs. I'm sorry to hear of you having so much trouble with you IVIG. Technically speaking I get IVIG treatments and thankfully don't have any side effects. But my pain management doc has told me if I were to have a severe reaction such as you are ,then he would take me off the treatments because such side effects can be as you know extremely dangerous. If I were you I would seek a second opinion from another pain management doc. Because it seems you are suffering from the treatments setting you back in a massive way and treatments are supposed to help and not make you feel way worse than before you had the treatment. I really hope you read my comment cause I'm going through very much the same treatments so I understand what is expected of the treatment. Or maybe talk to your current doctor being very honest with him of how the IVIG treatment is effecting you so badly. I pray you get some relief my friend. From one Pain Angel to another. Gentle hugs. Cheers
Hello Horologist Extreme, I believe she is very happy with her team and doctor. for her even though the side effects are really bad the good can be worth the few bad days.
Every treatment will effect people definitely we are all happy your ivig works well for you with minimal side affects.
good luck
Just glad yr now free from that reaction,hallow is still concerned she's not left yr side,hope tomorrow is a little brighter for you jaquie
So glad you wrote an update. Glad you are better. Stay strong.
I'm sorry :( I hope you and Judd have a good day today! maybe 15 is all your body can handle. It sometimes feels like it, but getting better is not a race.❤️
I'm not sure if it is available in your area, but here in Australia we have a manufactured IVIg product that causes a lot less side effects. It is not a blood product as it is purely manufactured and is said to be much easier on the body. It is called Privigen and I believe it is imported to Australia from America xx
You are so strong!!! Keep fighting and I hope you feel better
Stay strong Jaquie. Much love and prayers coming your way!
Hope you get to feeling better! I seriously hope you can figure out a way to keep using IVIG without side effects! Lots of good thoughts and wishes sent your way!
Jaquie I admire you soo much!!! You are soo strong❤️
I hope you start feeling better. Trust me I know how disappointing it can be to be doing everything right on your end but something still goes wrong and you end up in the er. But normally I am not lucky enough to get to go home. I usually end up in the hospital for a minimum of 3-5 days and usually it's more like 7-10 days. And I almost went to the er yesterday myself but thank God I started feeling better and was able to wait.
Im so sorry that happened. I hope that you can get better soon. Im glad thst you have family that can be there when they can. Its a blessing that your mom can be down the street to help you out. Keep your head up. If you need to take a break and juat focus on you. Dont worry ablut vlogging. I know you enjoy it but if you feel like you need a break take one please.
I often do too much on my good days and have a setback. Maybe take it easy for a couple more days after IVIG.
Dear Jaquie, I am so sorry that the things you need for your quality of life sometimes cause you trouble. I am so sorry that your feeding tube kinked again....that the hospital didn't have the right equipment when you went to have it replaced....and that IVIG which has the potential to help you SO MUCH also makes you so ill. I am praying for you now.
Good luck. Glad u r doing better. Your dad is soo cute! Glad ER doc fixed u up. Hang in there!!
Hope you get well soon jaquie and you dont need to explain yourself when your not well and dont have the energy to especially after IVIG Im sure everyone would understand jus stay strong your a lovely person enjoy tomorrow :) god bless you and your family
Jaquie,
How are you so alert in the vlog with that cocktail?! I was given a small dose of Dilaudid and man i was so out of it that started singing! Lol. Glad to hear you're feeling better!
Sending so much love to you gorgeous! You're so strong, you're such an inspiration. Im so sorry that today was so tough! Tomorrow is another day! Xx 💜
Hang in there. You are doing great with handling everything. It's hard but things will get better for you.
We love you and praying for you. So glad your better. Stop apologizing. We understand💕💕💕💕💕
Unfortunately we can do all the right things but when we have chronic illnesses we still have chronic illnesses. Or if we have chronic pain we still are going to have chronic pain even if we do everything just right. I am so sorry that you're having such a hard time I can see the struggle and the disappointment in your face and how tired you are. I hope you start feeling better soon and as always I will see you next time thank you so much bye
7:01 I understand completely, as I'm sure everyone of your subscribers does.
I hope you'll feel better soon.
I think ur doing a great job just keep trying something will give, I hope things get better with IVIG
Please take care and i hope that you are feeling a bit better now. You are in my thoughts and prayers and i totally understand what you mean when you say that medical stuff is getting to much. I hope that you both enjoy your day off and enjoy your adventure. I am so sorry that you had a reaction to the ivig again but hopefully you can talk to your doctor to see if you can maybe go down a dose or something. Just take care and God bless you both lot's of love from me kelli xxxxxx
You are awesome. Don’t ever give up. Keep working towards being good. And remember this, “There is no elevator to success, you have to take the stairs.”
“Also, What doesn’t kill you makes you stronger” I️ love quotes, I️ have about a million more if u want
@chronicallyJaquie I was wondering, I know you are feeling really bad lately, but are you still doing the patreon stuff? like the parties and everything? You never mention them any more....
I’m praying for you and thank you for the amazing videos 🙂
Thank you for sharing your life to us... I always look forward to your next vlog..
Your positive outlook inspite of your health issues does help me deal with my situation... be safe always. God bless.
Oh my goodness... I love you... I’m praying for you. 💖
Sorry it was a bad reaction day for you today. Hugs to you all!