Y'all are so sweet, thank you for the kind comments I have gotten thus far! I know my negative thoughts weren't logical... But I am not going to hide them. They are a very real part of dealing with chronic illness, so that is why I shared them. (Plus having anaphylaxis is always very distressing to me, no matter the scenario... Eventually I always work through it.) But, I also share how I cope: Aspire, strive. One day at a time! I appreciate all of y'all and I think sharing our collective stories helps us all feel less alone.
Chronically Jaquie I am so sorry you got sick on your trip. I know how frustrating that can be. I would like to offer some insight. I have never had anaphylaxis, but, I have found that I tend to be really moody and tired after I have an allergic reaction to something, or I have a chiropractic adjustment. My chiropractor told me that, when we have an allergic reaction, we release histamine, which is the hormone that makes us cry, as well as one of the hormones that triggers migraines.
Don't be embarrassed to share your health journey! You are helping so many people get through their chronic illnesses, and even people like me, who don't have any chronic illnesses, better understand the people who do. I am so much more aware of chronic illnesses since I found your channel. You are so strong, even when you feel weak. 💜💜
Thank you for sharing this with us. I certainly hope you continue to do well. Honey those of us that are also chronically ill totally understand the frustrations. Now, as far as the one day at a time. You are 100% correct. We can’t fix a day if we aren’t there yet. Your positivity is inspiring.
I’m proud of you for not being afraid to travel, knowing that your health can still be unpredictable at times. You ARE moving forward. 😀I can totally understand the frustration. I would be frustrated too. But you did it! Another bummer situation but you persevered! Any updates you might feel comfortable sharing about Jeniece?
Thank you for sharing even when it's not always easy or the most positive experience. It helps knowing we aren't alone in feeling similar. Doesnt mean we will stay in that mindset long term and like you said we always manage to work through it because after all we are warriors but we do find strength in each other and our stories. ♡
I have been watching for a wile and I now that you always move forward so that’s what I think helps me in school and everything that means that you can accomplish what you what to accomplish
I hope you feel better soon. I'm going through a very difficult time right now, and watching your videos always helps me. You always thank your viewers, but I would like to say thank you for sharing your journey with us, and being who you are. Thank you so much.
Hey Jaquie! I'm thinking, at least you know what it is and that you're finding out what works for you and what doesn't. People go through different things. Sometimes you gotta do what you gotta do! I hope you feel better very soon. xoxo
Anaphylaxis makes me angry and embarrassed too. Even when others are empathetic it still adds so much more stress. Not to mention the exhaustion. Just keep moving forward- you got this girl!
Girl, you have so much to deal with on a daily basis, it's amazing that your able to pick up the camera and film at all! I really hope everything with "the mass cell issues"(which I have minimal understanding of) gets figured out ASAP!! You are so inspiring to me, and I'm so happy and relieved that things are beginning to move in the right direction for you! You have come so far it's nothing short of Amazing!! Sending you Love+ Prayers+ Strength+ Hug's❤️💗💖💗❤️💪💪🙏🙏
Aww sweet girl 😘 I'm so sorry. Prayers for you and your mental health. It's ok to have setbacks I understand. Don't feel guilty it's out of your control.😘😘
Hi Jaquie, Aww it was so cute to see Harlow laying on you. I know she is a working dog but it was still cute. I'm sorry you go through so much. I pray for you.
sending prayers and positive vibes your way! Sometimes we just gotta remember to take everything one day at a time. Hope you're still enjoying the time with your family!
Thank you for sharing also this part of chronic illness. I recognise it, the guilt, the shame, the anger, the lack of control. I am positive most of the time, but sometimes you just can't . And then I feel the guilt of being not positive, that moment. Hope you're feeling better now and you can enjoy this familytrip! You're a great person!
keep a diary of all your symptoms this helps the doctors dont hold back the negative let it out one day at a time no one was given tomorrow when I used to climb it was at times one step forward two steps back going up hill you take a step forward and slide two steps back do to the loose gravel but you keep moving forward all illness is a up hill battle slow and easy gets you to the top you ARE doing good and as you say KEEP MOVING FORWARD
I know how you feel about hanging out with family and having an allergic reaction. I had one last thanksgiving and it came out of nowhere. I was constantly thinking of the reaction and fearing having another one and was frustrated also. What you said in the beginning of the video is literally how I felt but I am happy now and try to get the most out of my day whether it is being exhausted and sleeping or getting out of the house.
Thanks for sharing your truth hun. I absolutely get how the frustration and anger arrise. I know first hand the importance of feeling those emotions & being with them for a short while to process & feel. It's a healthy perspective to have. As a former CBT therapist I can reassure you what excellent mental health you have. Here's to a better few days ahead. Much love your EDS NZ sister xoxo
I’m so sorry to hear this Jaquie! You can only deal with things as they happen. It is what is , as I always say. I know you felt embarrassed, but you shouldn’t. Your family is behind you and grateful that you are ok now. No “self loathing” ! Your TH-cam family is behind you too! ❤️
Aah jaqiue, I really hope that never happens again for you as clearly it came as a shock to you, it's nice to know that you are slowly getting over it though, I hate my bad days too but you can't have the good without the bad, my mother used to say 🧡
I am so sorry and I keep all of you guys in my prayers. I may not suffer from the same issues as you but I am also chronically ill. I feel like I know you and you are in my heart. God bless you. Robin..😃❤
Just a glitch and you always handle them so well. Hope you enjoy the rest of your vacation and family. Remember how much everyone loves you and understands. You always amaze me how you handle every situation.
Thank you for sharing both your good and bad days. I really love looking at your videos because they remind me to take my life one day at a time, too. I work full-time and live on my own, but I have two chronic illnesses and the battle against fatigue and fever is unreal. Hope you get better from the allergic reaction soon and I hope it doesn't happen again. Looking forward to your next video! :)
I myself have been dealing with chronic illness since I was 3yrs old, I'm now 36yrs old! I know and can totally re,ate to what you are going through and how you are feeling as I too have a Hickman line as I'm on TPN 7 nights a week I have been on TPN for over 7yrs now, I have intestinal failure, Mass Cell, EDS, Dysautonomia, Mitochondrial disease, epilepsy, the list goes on... I always feel like I'm ruining family time whenever I become unwell and end up in hospital or ER etc. as you just feel guilty for having to put a hold on family time, you are one minute enjoying being with family, having fun and then suddenly our body will let us down and our chronic illness takes over and it sucks to live life like this each day as you can never plan anything as you know at anytime our bodies will become tired and we will get a severe flare up of our conditions we have. You are amazing jaquie, Harlow is super cute and please continue battling through this as you are a true inspiration to us all. Love and God bless.
I hate feeling like chronic illness is my fault. I’m always so worried about disappointing others I often forget to take care of myself and when you have a chronic illness rest and self care is KEY
I understand how frustrated you can get. We are visiting our family for a wedding and I had a tremor episode and scared the crap out of everyone. I kept apologizing even though I really know it is not my fault. I felt guilty as well. It is a difficult situation. It’s hard not to feel like you are ruining their fun. They did not blame me, but it was not logical to blame myself. It is ok to cry and get upset. I did not have my service dog with me because he is not ready for public access. I wish I had him to cuddle like you have Hippo. Hugs and understanding. Keep moving forward. I am now at Cleveland Clinic for tests and meeting with multiple doctors about POTS, Klippel Feil, Syringomyelia and my pain. I felt good about my Neurologist meeting. He spent three hours with me. Keeping a journal is a great way to determine what is going on with our health.
Praying for you, along with everyone else going through similar feelings. It is extremely tough.... feeling like a let down to people you love is horrible. I wish we didn’t feel this way, but we do, and it’s okay.
Dear Jaquie, although I don't know if you read this, I just wanted to tell you: I am feeling with you! These bad reactions and flare ups ruin all good days! But I am sure your family is understanding and helpful as possible! You are strong but even the strongest perosn gets a lack of energy to stand all the pain and issues! Crying might not cure it but it helps the soul to get rid of the bad vibes! I do cra a lot when I am in a bad health condition. It sure doesn't heal the problem ,but it heals a part of my soul then. Harlow is so wonderful! she is reall loving you! So glad there is THE ONE who understands everything you say or do without questioning and getting mad on you! I love dogs! All the best and that you can enjoy the stay at your aunts home! And have a safe trip home! As I am going to Scotland on a 9 day bus tour I am much concerned about my helath too. Multiple Sclerosis is also unpredictable and I really hope that I don't have too many issues. but my concernes will be traveling with me... lots of love from Germany, sincerely Britta
I totally get the feeling. I suffer from chronic back pain, mostly from a bad fall (in March 2014) and fractured my L1 and now have 3 bulging discs. I am also a carrier for Duchennes Muscular Dystrophy, which gives me muscle weakness and the fall caused it to progress more quickly. Anyway, I get sad and upset every time I fall (I am unable to get up on my own) or my walker crashes into everything and when I drop stuff. My husband likes to tell me all the time my being upset is irrational. It’s hard to see that, when you are in the middle of it all. Nothing I have is even close to your chronic illnesses. I think you have a great attitude towards it all. Doing the best you can, is the best you can do.
I totally get you. I have chronic Dysautonomia. I have two small children and a partner. I go to a beautiful energy healer and I’ve greatly looked at the metaphysical symptoms of my illness. I’m healing my gut too. There is such a strong mind body connection. I’m not denying yours or mine or anyone else’s diseases or illnesses. I’m just highlighting the mind body link. Gabor Maté is another guy to look at. I am done w doctors, that’s just for me. They have left me on the shelf, not giving a shit Here in Ireland I found a great functional medicine doc and chiropractor. I wish u the very best xxxx
Did you know that harlo was on the 63 on the top 100 2017 When she got you water just hope the brightens you mood it was when she broght you the ranch instead of the water
It’s interesting to watch Harlow while you’re talking. She was “working” watching you body language, and making sure you’re ok. Love her and love you too. I can see positive changes in the way you look and act. I was so happy seeing you eat solid food in one video. Also keep in mind with every incident you learn a little more about your chronic illness and how it can be controlled. Keep the faith! You are in control more and more each day!
I'm so sorry that happened Jaquie. I know exactly the feelings you had about it happening while staying with your relatives. I have a disease that makes my bones incredible brittle. I've had 120 fractures in my 39 years. There have been several times where I've fractured at someone else's house or right in the middle of something fun and in front of everyone. Even though I'm in a ton of pain immediately I always feel super guilty. I think that I have just ruined everything for everybody. I also feel incredibly guilty that my husband and my Mom will have to spend the next three months caring for me around the clock. Everyone always says its ok and that i haven't ruined anything. My Mom and husband always assure me that its ok and they don't mind having to help me so much. But, I can't help it....all 120 fractures I have felt extremely guilty. That's ok to feel that way and you and I cannot help the way we feel at first. But this is why we have such an amazing, caring and loving support system around us. They help us work through our emotions and frustrations. They help us to realize that we cannot control what our bodies decide to do sometimes. They help us to keep moving forward. Jaquie, you are an amazing woman that has inspired me on so many days to keep moving forward. You are not alone because I feel them too.
I hear ya, girl. It would be great if we could have a break from time to time with this stuff. It’s exhausting! *hugs to you* It’s perfectly fine and normal to get frustrated and even mad from time to time, especially if it feels like you’re the only one in your family or social group that goes through these things.
Jaquie Sweetie, You beautiful young lady. We are in similar circumstances. Pain, suffering does talk. It's not you who spoke, it was illness. Your ok to share anything you wish, I pray for you as I look at keeping things in perspective. Sending love to you, Jud, Harlow.
Hi Jaquie it's been a while since i reached out. Please stop worrying about what happens on your adventures. Even those of us who are healthy get sick on Holiday... enjoy one day at a time. Family is family and they will always have your back. You friend Paty and Molly
I'm very happy that you are okay, as someone who deals with medical issues as well I know how frustrating it can be and the wide Gulf of emotions that you go through whether they're warranted or not and others opinion. You are a very strong lady and I find encouragement in your strength and in your positive outlook on life so thank you for be inspiring.
Jaquie hang in there love 💗 This too shall pass. I suffer from a variety of stomach issues. Every single time I travel outside California or just my city 😢.. I flare up and no Bueno...
That's chronic illness. One day we are living a dream of no flares and the next day I'm sobbing in the floor with pain. It's not our fault. I'm the only one in my family who is always Sick. They even mock me sometimes which is hurtful. However, we must Continue no matter what issue is in front of us. God bless us all 😢
I am so sorry! I get like that too with my family. They understand though , I am glad yours does too! I love how Harlow is so supportive and cuddly she is amazing! I'm glad you are okay physically but sad you had to go to the er and you are sad about it and angry. I get it. It's okay to be like that. We are all here for u! I have been saying one day at a time for years lol!
You could also be reacting to others perfumes and scents. This is a common trigger for masties. Glad you are learning more about the mast cell stuff. Hope you feel relief soon
So sorry you went through that. None of us can be positive at all times. As someone who has stage 5 kidney disease, I know. Praying for you to stay strong.
I feel ya, my EDS and endometriosis have been tough these last few weeks and I'm so frustrated, I have felt many of these things, shame, guilt, embarrassment, anger. Most days I fight and am positive and okay but it's so hard sometimes. Much love to you.
MCAS is like that, unpredictable,?ive missed out on many many many many many many many many many i think u get the point,,I've missed out on many family gatherings, family reunions, weddings, birthdays, graduations and vacations because of my health issues, it's NOT about what you can't do bit how you manage !!! Also why do ur anaphylactic reactions seem happen when ur around your family? Do they wear perfumes or smoke or do stuff that triggers ur reactions??
Sorry that things have been a bummer with your chronic illnesses lately. And it’s ok to not feel positive all the time, even people that seem to have perfect lives, have bad days. You sharing these days help me as a chronic illness warrior, know that it’s not just me that has bad days too! Thank you for sharing your experiences with us!
One thing about getting sick here in the Triangle is we have terrific hospitals. Durham is actually called the City of Medicine. Great place to be for anyone with health problems. WakeMed is awesome Duke is great and so is UNC. Glad you didn't have to stay inpatient. I was worried about you ending up in the hospital up here. Hope you make it back with no problems.
Aw. I hate when this stuff happens. It always puts me in a down mood, and makes me feel guilty. I totally understand where you come from, it makes me so mad cause I am a person that needs to be in control as well. Its okay not to be positive all the time, I'm positive all the time but sometimes theres days you have to cry in the shower for an hour. Take it one day at a time and feel the feels when you need to.
I'm so sorry. The positives are that your family was unfazed by it ( that's always a factor, how are they going to react). Also, you got to come home and are able to take it easy in somewhat familiar setting. I hate how chronic illness not only pops up when it wants but does so forcefully! RUDE! We are all here for you and as hard as it is that you share it with us.
Hey Jacquie! I'm so sorry to hear that you had such a bad experience on your vacation. I have been watching your videos for quite some time, and always look forward when I get the notification 😊. To me, it's wonderful that you're sharing your life journey to educate, inspire, and inform others that not every person who suffers from a chronic illness and pain shows it on the outside. I have had chronic pancreatitis for almost 25 years. Since you're well medically educated, I'm sure you know what that is. I have been nauseous, in pain, and hospitalized many, many times over the years, and anyone who knows me well, is aware that I'll avoid the ER as much as possible! (Last time I was hospitalized was almost a year ago. Last week, I just started oral medication for diabetes because of the damage to my pancreas. My A1C, has been tracked for almost 5 years, and it just won't come down. Such is life. We have given the hand we are dealt, and must deal with it. In fact, I started college in my 50's, and the end goal is nursing. I feel like I would make a fantastic health care professional because I UNDERSTAND! My thought process is that I would rather work long (12 hr) shifts, fewer days per week, which would lessen my chance of missing work days, or being on disability. I love it when Judd talks about how hard you work to do things on your own, you remind me of me. I'm sorry you had to have this experience on your vacay but hope you are feeling much better! I'm sure being away from Judd, stresses you, even if you're not aware of it, and we both know, stress exacerbates everything. Thinking and praying for you. (BTW, my pancreatitis stems from gallbladder disease, which they believe was caused by stress.) Hope you enjoy the rest of your vacation. ❤ xoxo
Hello Lisa, thank you for sharing your story. Your message was what my mind needed. I was diagnosed with chronic pancreatitis a year ago and its been a struggle getting my health back. I specifically wanted to reach out to you and wish luck on becoming a nurse. I've been a pediatric nurse for 12 years and I still love nursing. One of the best parts about nursing is the flexibility of schedule. You can even work 1 day a month as a per diem nurse, which I have done in the past. It's really is great profession that is rewarding in many ways. My patients have taught me profoundly valuable lesson that I use daily to care for myself and those around me. Nursing to me is a healing art that takes great compassion, understanding and patiences. LOTS of patiences :). In the world of disease/illness, what I have come to realize (now that I am the patient and not the nurse) is that we know so much and yet we know so little. Therefore it takes a great amount of resilience and patience to keep moving despite the unpredictable nature of our lives. Jacquie demonstrates this beautifully- KEEP MOVING FORWARD as she always says :). Thank you again for your post! I rarely read the comments section, but I'm so happy I found your message. You sprinkled hope into my heart. It's reassuring to find other lovely people dealing with this debilitating illness. I am so glad you are choosing to go into the nursing profession and sincerely wish you the best. From your message alone, I can tell your kind nature will be wonderful asset to the nursing family. May you find joy throughout your journey. Good luck fellow CP warrior!
Sorry that you had to go thru all that. I totally empathize with you, I have those anaphylactic moments too. Last one happened while on vacation in AZ, in a reaction to being exposed to cats at a family members home. I felt so embarrassed but then realized its beyond my control. If anything, we are harder on ourselves than anyone else can be. You just need to get rest, and let Judd pamper you for a bit.
I am told "I am too sensitive" and ya know what that's ok with me. I battle the up's/downs of having a rare autoimmune disease like you and lately I realized I still have problems admitting to myself that I have to pace myself more. I also for some reason say "I am sorry" excessively and I think half the time I don't even know I'm doing it. You are brave and encouraging or at least I think you are. I subbed a while back because I was trying to find people I can identify with and the rawness of your life and the unpredictability and the reality of what we all go through with an immune disease. Don't be so hard on yourself. I've been in bed for over a week now because I went out to a concert and I tried to act like I could keep up and I did keep up but then I paid a price.Its lack of control for me and I get scared and for some reason my inner dialogue can go from okay to severe anxiety and I get very emotional. I now realize there are some things I really have to prep for or just say no. It's a learning curve. Much luv, you are doing awesome! ✌️💕😉
It hurts me to hear you having a hard time 😔 I think I understand how you feel. I have severe Ehlers-Danlos syndrome, epilepsy and Horton’s disease. I can never predict a day in my life really, but I have learned how to cope with life. I am always optimistic and try to not feel too much guilt when I don’t have the strength to get out of bed. My youngest child is 10 is used to have a handicapped mum (I need a power wheelchair ) but still I the guilt is there sometimes. Stay strong! 💪🏽
I'm sorry Jaquie that happened. But things happen that we can't control. I take seizure med. But I can still have seizures depending on how much stress I've been through and med reactions. Please don't feel embarrassed. Hope the rest of your visit with family will go smoothly. Praying for you girl.
Jaquie darling, allergic reactions can come out of nowhere! This was NOT your fault, cariad. G-d is watching over you and we’re all holding you up with our love and cheering for you. This will settle again after a few days xxxxxxxxxxxxxxx
Oh no! I hope you get to feeling better soon. I can't imagine how the ups and downs of your health must feel. Thank you for sharing your story, I think you are amazing and so strong! Watching your story has been very inspiring for me. Keep your chin up, you've got this! I am glad you have such supportive family. I love you, Hippo, and Judd and I love watching your channel. Sending love, hugs, and positive vibes from Plano, Texas! 💜💜💜💪💪💪
I’m so sorry you went through such a very tough time! Feeling emotions that aren’t “rationally warranted” is completely understandable, especially when you’ve been such a trouper and have tried so hard to make things work for yourself and those you love. I so wish some people would support us in such emotional struggles, even if they can’t understand them fully. I’m glad you were able to get in touch with those emotions; they are valid - very hard to ride out, but valid nonetheless. Please be kind to, patient and gentle with yourself - Easier said than done, I know. Wishing you continued healing, peace and joy. You deserve absolutely nothing less.
sorry that happened to you on your vacation with your family. At least you did not have to stay in the hospital for a long length of time (like days). Hope you are feeling better and will continue to feel much better.
I’ve recently found a new way to look at life. I too struggle with chronic illness but I’m positive that I will be healed. I can’t fully explain it but if you watch “The Secret” on Netflix I’m sure you too will look at your struggles differently. Please let me know if you do watch it.💕
It's very easy to feel like you ruin things....I do the same thing. I got to where I wouldn't be part of any kind of family outing due to not wanting to ruin anything. I am trying to work on that because family time is precious. I give myself 1 hour to cry and get mad and then I stop. It works for me because I can get sucked into depression that I let get out of hand. BIG hugs to you ❤️
Aww Jacquie iam so sorry your unwell I hope you feel better soon it is natural to blame yourself when your feeling unwell it is definitely not your fault I really hope you get better soon and things get back on track love you Jacquie
I'm so sorry!!! Thats horrible!!!! I hope you're feeling better. You are so strong and such an inspiration. Stay strong and keep moving forward. 😁😀😁 Sending love and prayers always, Abby. 😘😘😘
With everything you have on your plate, health wise, I would be concerned if you didn’t have times of frustration and anger. Acknowledging and dealing with them will get you through everything you face. Keep strong!
So sorry you had to go through that. All your emotions are justified and normal in your situation. You are a beautiful strong person and you are so generous to share your situation in a public forum. You are helping a lot of people.
Praying for you Jaquie. I hate seeing you feel like this, because I know what it feels like. But all you can do is take care of you, and your wonderfully supportive family will always be there for you. You are so inspirational.
Thankful for your understanding, wonderful family and that your allergist is trying to help you come up with an answer! I hope you get one sooner rather than later. Lack of energy/things going not-so-great is definitely hard, especially in front of people. Don't feel ashamed to be embarrassed. You're human and you're going to have human emotions. That being said, you're human and sometimes, that means your body acts in a way you don't want it to. Like your family said, being chronically ill isn't your fault. Gentle hugs and spoons!!!
Some times it is one hour at a time. Were you able to figure out what set you off? Glad your ER trip was a quick one and not a stay. Head up kiddo! You handle things really well and keep yourself in check. Just don't forget to every once in a while laugh at yourself. We all do things that are goofy. It helps to be able to laugh! Enjoy the rest of your visit. (and hug Hippo for me! I always want to kiss that adorable face!)
I’m SO glad you made it through that anaphylaxis!! Such a terrifying experience!!! We are cheering for you!! Hang in there, I’m thinking of you, sending gentle hugs your way, and lots of prayers. Please try to be kind to yourself-you mentioned you knew it wasn’t your fault what happened, but please try to believe it!!
Y'all are so sweet, thank you for the kind comments I have gotten thus far! I know my negative thoughts weren't logical... But I am not going to hide them. They are a very real part of dealing with chronic illness, so that is why I shared them. (Plus having anaphylaxis is always very distressing to me, no matter the scenario... Eventually I always work through it.) But, I also share how I cope: Aspire, strive. One day at a time! I appreciate all of y'all and I think sharing our collective stories helps us all feel less alone.
Get better
Your awesome don’t give up I am here for you :)
Jaquie, the best you can do....is perfect!
Chronically Jaquie I am so sorry you got sick on your trip. I know how frustrating that can be. I would like to offer some insight. I have never had anaphylaxis, but, I have found that I tend to be really moody and tired after I have an allergic reaction to something, or I have a chiropractic adjustment. My chiropractor told me that, when we have an allergic reaction, we release histamine, which is the hormone that makes us cry, as well as one of the hormones that triggers migraines.
I had a tough chronically ill day myself. All the emotions are legitimate and we need to go through them to get past them
Don't be embarrassed to share your health journey! You are helping so many people get through their chronic illnesses, and even people like me, who don't have any chronic illnesses, better understand the people who do. I am so much more aware of chronic illnesses since I found your channel. You are so strong, even when you feel weak. 💜💜
Thanks for being honest about your feelings concering your chronic illnesses. It allows those of us who struggle also, to connect even more with you.
Thank you for sharing this with us. I certainly hope you continue to do well.
Honey those of us that are also chronically ill totally understand the frustrations.
Now, as far as the one day at a time. You are 100% correct. We can’t fix a day if we aren’t there yet.
Your positivity is inspiring.
I’m proud of you for not being afraid to travel, knowing that your health can still be unpredictable at times. You ARE moving forward. 😀I can totally understand the frustration. I would be frustrated too. But you did it! Another bummer situation but you persevered! Any updates you might feel comfortable sharing about Jeniece?
Thank you for sharing even when it's not always easy or the most positive experience. It helps knowing we aren't alone in feeling similar. Doesnt mean we will stay in that mindset long term and like you said we always manage to work through it because after all we are warriors but we do find strength in each other and our stories. ♡
I have been watching for a wile and I now that you always move forward so that’s what I think helps me in school and everything that means that you can accomplish what you what to accomplish
Oh Jaquie, sending you all my love and support. I’m so sorry you went through that. Praying for you always. Big hugs ❤️
I hope you feel better soon. I'm going through a very difficult time right now, and watching your videos always helps me. You always thank your viewers, but I would like to say thank you for sharing your journey with us, and being who you are. Thank you so much.
Hey Jaquie! I'm thinking, at least you know what it is and that you're finding out what works for you and what doesn't. People go through different things. Sometimes you gotta do what you gotta do! I hope you feel better very soon. xoxo
Anaphylaxis makes me angry and embarrassed too. Even when others are empathetic it still adds so much more stress. Not to mention the exhaustion. Just keep moving forward- you got this girl!
Girl, you have so much to deal
with on a daily basis, it's amazing that your able to pick up the camera and film at all! I really hope everything with "the mass cell issues"(which I have minimal understanding of) gets figured out ASAP!! You are so inspiring to me, and I'm so happy and relieved that things are beginning to move in the right direction for you! You have come so far it's nothing short of Amazing!! Sending you Love+ Prayers+ Strength+ Hug's❤️💗💖💗❤️💪💪🙏🙏
I will be praying for you .You take care and stay determined ..
So glad you are OK!!!! Be thankful for the good times you are having on your trip!!! Family never judges they love..... 💕💕🙏🏻🙏🏻
Aww sweet girl 😘 I'm so sorry. Prayers for you and your mental health. It's ok to have setbacks I understand. Don't feel guilty it's out of your control.😘😘
Hi Jaquie, Aww it was so cute to see Harlow laying on you. I know she is a working dog but it was still cute. I'm sorry you go through so much. I pray for you.
sending prayers and positive vibes your way! Sometimes we just gotta remember to take everything one day at a time. Hope you're still enjoying the time with your family!
Thank you for sharing also this part of chronic illness. I recognise it, the guilt, the shame, the anger, the lack of control. I am positive most of the time, but sometimes you just can't . And then I feel the guilt of being not positive, that moment. Hope you're feeling better now and you can enjoy this familytrip! You're a great person!
keep a diary of all your symptoms this helps the doctors
dont hold back the negative let it out
one day at a time no one was given tomorrow
when I used to climb it was at times one step forward two steps back going up hill
you take a step forward and slide two steps back do to the loose gravel
but you keep moving forward
all illness is a up hill battle
slow and easy gets you to the top
you ARE doing good and as you say KEEP MOVING FORWARD
I know how you feel about hanging out with family and having an allergic reaction. I had one last thanksgiving and it came out of nowhere. I was constantly thinking of the reaction and fearing having another one and was frustrated also. What you said in the beginning of the video is literally how I felt but I am happy now and try to get the most out of my day whether it is being exhausted and sleeping or getting out of the house.
never apologize for being real. i wish more people were like you. stay strong and hug that wonderful dog of yours. 😄👍❤️💪
Harlow is so understanding 💗😭
I have type 1 diabetes and some other illnesses and I have struggled with the same negative thoughts. I hope you are doing better. Lots of love
Thanks for sharing your truth hun. I absolutely get how the frustration and anger arrise. I know first hand the importance of feeling those emotions & being with them for a short while to process & feel. It's a healthy perspective to have. As a former CBT therapist I can reassure you what excellent mental health you have. Here's to a better few days ahead. Much love your EDS NZ sister xoxo
I’m so sorry to hear this Jaquie! You can only deal with things as they happen. It is what is , as I always say. I know you felt embarrassed, but you shouldn’t. Your family is behind you and grateful that you are ok now. No “self loathing” !
Your TH-cam family is behind you too!
❤️
Aah jaqiue, I really hope that never happens again for you as clearly it came as a shock to you, it's nice to know that you are slowly getting over it though, I hate my bad days too but you can't have the good without the bad, my mother used to say 🧡
I hope you feel better soon and keep moving forward with Love.
I am so sorry and I keep all of you guys in my prayers. I may not suffer from the same issues as you but I am also chronically ill. I feel like I know you and you are in my heart. God bless you.
Robin..😃❤
I feel u girl!!!! I have chronic illness and chronic pain Too so I totally get it!!
Just a glitch and you always handle them so well. Hope you enjoy the rest of your vacation and family. Remember how much everyone loves you and understands. You always amaze me how you handle every situation.
Thank you for sharing both your good and bad days. I really love looking at your videos because they remind me to take my life one day at a time, too. I work full-time and live on my own, but I have two chronic illnesses and the battle against fatigue and fever is unreal. Hope you get better from the allergic reaction soon and I hope it doesn't happen again. Looking forward to your next video! :)
I myself have been dealing with chronic illness since I was 3yrs old, I'm now 36yrs old! I know and can totally re,ate to what you are going through and how you are feeling as I too have a Hickman line as I'm on TPN 7 nights a week I have been on TPN for over 7yrs now, I have intestinal failure, Mass Cell, EDS, Dysautonomia, Mitochondrial disease, epilepsy, the list goes on... I always feel like I'm ruining family time whenever I become unwell and end up in hospital or ER etc. as you just feel guilty for having to put a hold on family time, you are one minute enjoying being with family, having fun and then suddenly our body will let us down and our chronic illness takes over and it sucks to live life like this each day as you can never plan anything as you know at anytime our bodies will become tired and we will get a severe flare up of our conditions we have. You are amazing jaquie, Harlow is super cute and please continue battling through this as you are a true inspiration to us all. Love and God bless.
I hate feeling like chronic illness is my fault. I’m always so worried about disappointing others I often forget to take care of myself and when you have a chronic illness rest and self care is KEY
I hope you will be well and take care.
Absolutely! It's frustrating when I have to stop what I am doing to take my meds, but, I feel lousy when I don't.
Daniella From You are absolutely right! Best wishes and prayers to you. xoxo
Hope you get better. I also love watching you videos. You can do anything
I understand how frustrated you can get. We are visiting our family for a wedding and I had a tremor episode and scared the crap out of everyone. I kept apologizing even though I really know it is not my fault. I felt guilty as well. It is a difficult situation. It’s hard not to feel like you are ruining their fun. They did not blame me, but it was not logical to blame myself. It is ok to cry and get upset. I did not have my service dog with me because he is not ready for public access. I wish I had him to cuddle like you have Hippo. Hugs and understanding. Keep moving forward.
I am now at Cleveland Clinic for tests and meeting with multiple doctors about POTS, Klippel Feil, Syringomyelia and my pain. I felt good about my Neurologist meeting. He spent three hours with me. Keeping a journal is a great way to determine what is going on with our health.
Praying for you, along with everyone else going through similar feelings. It is extremely tough.... feeling like a let down to people you love is horrible. I wish we didn’t feel this way, but we do, and it’s okay.
Thanks so much for sharing. I can relate to how you feel sometimes. You inspire me so much! So thanks 🙏
We love you Jaquie, stay strong and God bless you.
I am so sorry this happened, you are so strong!
Dear Jaquie, although I don't know if you read this, I just wanted to tell you: I am feeling with you! These bad reactions and flare ups ruin all good days! But I am sure your family is understanding and helpful as possible!
You are strong but even the strongest perosn gets a lack of energy to stand all the pain and issues! Crying might not cure it but it helps the soul to get rid of the bad vibes! I do cra a lot when I am in a bad health condition. It sure doesn't heal the problem ,but it heals a part of my soul then.
Harlow is so wonderful! she is reall loving you! So glad there is THE ONE who understands everything you say or do without questioning and getting mad on you! I love dogs!
All the best and that you can enjoy the stay at your aunts home!
And have a safe trip home!
As I am going to Scotland on a 9 day bus tour I am much concerned about my helath too. Multiple Sclerosis is also unpredictable and I really hope that I don't have too many issues. but my concernes will be traveling with me...
lots of love from Germany, sincerely Britta
I totally get the feeling. I suffer from chronic back pain, mostly from a bad fall (in March 2014) and fractured my L1 and now have 3 bulging discs. I am also a carrier for Duchennes Muscular Dystrophy, which gives me muscle weakness and the fall caused it to progress more quickly. Anyway, I get sad and upset every time I fall (I am unable to get up on my own) or my walker crashes into everything and when I drop stuff. My husband likes to tell me all the time my being upset is irrational. It’s hard to see that, when you are in the middle of it all. Nothing I have is even close to your chronic illnesses. I think you have a great attitude towards it all. Doing the best you can, is the best you can do.
I totally get you. I have chronic Dysautonomia. I have two small children and a partner. I go to a beautiful energy healer and I’ve greatly looked at the metaphysical symptoms of my illness. I’m healing my gut too. There is such a strong mind body connection. I’m not denying yours or mine or anyone else’s diseases or illnesses. I’m just highlighting the mind body link. Gabor Maté is another guy to look at. I am done w doctors, that’s just for me. They have left me on the shelf, not giving a shit Here in Ireland I found a great functional medicine doc and chiropractor. I wish u the very best xxxx
Jacquie, hugs for you! That was awful, but you still manage to work through it. You are wonderful!
I love you guys! Hope you feel better
Did you know that harlo was on the 63 on the top 100 2017 When she got you water just hope the brightens you mood it was when she broght you the ranch instead of the water
Sending you prayers Jaquie love you ! ❤️❤️🙏🏼
Sorry about this but stay strong and keep moving forward!!!
It’s interesting to watch Harlow while you’re talking. She was “working” watching you body language, and making sure you’re ok. Love her and love you too. I can see positive changes in the way you look and act. I was so happy seeing you eat solid food in one video. Also keep in mind with every incident you learn a little more about your chronic illness and how it can be controlled. Keep the faith! You are in control more and more each day!
I'm so sorry that happened Jaquie. I know exactly the feelings you had about it happening while staying with your relatives. I have a disease that makes my bones incredible brittle. I've had 120 fractures in my 39 years. There have been several times where I've fractured at someone else's house or right in the middle of something fun and in front of everyone. Even though I'm in a ton of pain immediately I always feel super guilty. I think that I have just ruined everything for everybody. I also feel incredibly guilty that my husband and my Mom will have to spend the next three months caring for me around the clock. Everyone always says its ok and that i haven't ruined anything. My Mom and husband always assure me that its ok and they don't mind having to help me so much. But, I can't help it....all 120 fractures I have felt extremely guilty. That's ok to feel that way and you and I cannot help the way we feel at first. But this is why we have such an amazing, caring and loving support system around us. They help us work through our emotions and frustrations. They help us to realize that we cannot control what our bodies decide to do sometimes. They help us to keep moving forward.
Jaquie, you are an amazing woman that has inspired me on so many days to keep moving forward. You are not alone because I feel them too.
Keep the faith. Some days the faith is as good as it gets especially when chronic illness gets frustrating.
I hear ya, girl. It would be great if we could have a break from time to time with this stuff. It’s exhausting! *hugs to you* It’s perfectly fine and normal to get frustrated and even mad from time to time, especially if it feels like you’re the only one in your family or social group that goes through these things.
Jaquie Sweetie, You beautiful young lady. We are in similar circumstances. Pain, suffering does talk. It's not you who spoke, it was illness. Your ok to share anything you wish, I pray for you as I look at keeping things in perspective. Sending love to you, Jud, Harlow.
Hi Jaquie it's been a while since i reached out. Please stop worrying about what happens on your adventures. Even those of us who are healthy get sick on Holiday... enjoy one day at a time. Family is family and they will always have your back. You friend Paty and Molly
God bless you Jacquie! You are an incredible woman. Thank you so much for sharing your life.
I'm very happy that you are okay, as someone who deals with medical issues as well I know how frustrating it can be and the wide Gulf of emotions that you go through whether they're warranted or not and others opinion. You are a very strong lady and I find encouragement in your strength and in your positive outlook on life so thank you for be inspiring.
Jaquie hang in there love 💗 This too shall pass. I suffer from a variety of stomach issues. Every single time I travel outside California or just my city 😢.. I flare up and no Bueno...
That's chronic illness. One day we are living a dream of no flares and the next day I'm sobbing in the floor with pain. It's not our fault. I'm the only one in my family who is always Sick. They even mock me sometimes which is hurtful. However, we must Continue no matter what issue is in front of us. God bless us all 😢
Thank u for sharing ❤ keep moving forward!
I am so sorry! I get like that too with my family. They understand though , I am glad yours does too! I love how Harlow is so supportive and cuddly she is amazing! I'm glad you are okay physically but sad you had to go to the er and you are sad about it and angry. I get it. It's okay to be like that. We are all here for u! I have been saying one day at a time for years lol!
You could also be reacting to others perfumes and scents. This is a common trigger for masties. Glad you are learning more about the mast cell stuff. Hope you feel relief soon
So sorry you went through that. None of us can be positive at all times. As someone who has stage 5 kidney disease, I know. Praying for you to stay strong.
Love you miss jaquie, keep moving forward we are here for you every step of your way! Gentle hugs! From your biggest Aussie spoonie supporter xxxx
I feel ya, my EDS and endometriosis have been tough these last few weeks and I'm so frustrated, I have felt many of these things, shame, guilt, embarrassment, anger. Most days I fight and am positive and okay but it's so hard sometimes. Much love to you.
MCAS is like that, unpredictable,?ive missed out on many many many many many many many many many i think u get the point,,I've missed out on many family gatherings, family reunions, weddings, birthdays, graduations and vacations because of my health issues, it's NOT about what you can't do bit how you manage !!! Also why do ur anaphylactic reactions seem happen when ur around your family? Do they wear perfumes or smoke or do stuff that triggers ur reactions??
Sorry that things have been a bummer with your chronic illnesses lately. And it’s ok to not feel positive all the time, even people that seem to have perfect lives, have bad days. You sharing these days help me as a chronic illness warrior, know that it’s not just me that has bad days too! Thank you for sharing your experiences with us!
One thing about getting sick here in the Triangle is we have terrific hospitals. Durham is actually called the City of Medicine. Great place to be for anyone with health problems. WakeMed is awesome Duke is great and so is UNC. Glad you didn't have to stay inpatient. I was worried about you ending up in the hospital up here. Hope you make it back with no problems.
I had to cancel a birthday event that my husband planned for me
You got an awesome family.
Aw. I hate when this stuff happens. It always puts me in a down mood, and makes me feel guilty. I totally understand where you come from, it makes me so mad cause I am a person that needs to be in control as well. Its okay not to be positive all the time, I'm positive all the time but sometimes theres days you have to cry in the shower for an hour. Take it one day at a time and feel the feels when you need to.
I'm so sorry. The positives are that your family was unfazed by it ( that's always a factor, how are they going to react). Also, you got to come home and are able to take it easy in somewhat familiar setting. I hate how chronic illness not only pops up when it wants but does so forcefully! RUDE! We are all here for you and as hard as it is that you share it with us.
I love you and I wish that what happened to you never did I love you and hop you feel better
Hey Jacquie! I'm so sorry to hear that you had such a bad experience on your vacation. I have been watching your videos for quite some time, and always look forward when I get the notification 😊. To me, it's wonderful that you're sharing your life journey to educate, inspire, and inform others that not every person who suffers from a chronic illness and pain shows it on the outside. I have had chronic pancreatitis for almost 25 years. Since you're well medically educated, I'm sure you know what that is. I have been nauseous, in pain, and hospitalized many, many times over the years, and anyone who knows me well, is aware that I'll avoid the ER as much as possible! (Last time I was hospitalized was almost a year ago. Last week, I just started oral medication for diabetes because of the damage to my pancreas. My A1C, has been tracked for almost 5 years, and it just won't come down. Such is life. We have given the hand we are dealt, and must deal with it. In fact, I started college in my 50's, and the end goal is nursing. I feel like I would make a fantastic health care professional because I UNDERSTAND! My thought process is that I would rather work long (12 hr) shifts, fewer days per week, which would lessen my chance of missing work days, or being on disability. I love it when Judd talks about how hard you work to do things on your own, you remind me of me. I'm sorry you had to have this experience on your vacay but hope you are feeling much better! I'm sure being away from Judd, stresses you, even if you're not aware of it, and we both know, stress exacerbates everything. Thinking and praying for you. (BTW, my pancreatitis stems from gallbladder disease, which they believe was caused by stress.) Hope you enjoy the rest of your vacation. ❤ xoxo
Hello Lisa, thank you for sharing your story. Your message was what my mind needed. I was diagnosed with chronic pancreatitis a year ago and its been a struggle getting my health back. I specifically wanted to reach out to you and wish luck on becoming a nurse. I've been a pediatric nurse for 12 years and I still love nursing.
One of the best parts about nursing is the flexibility of schedule. You can even work 1 day a month as a per diem nurse, which I have done in the past. It's really is great profession that is rewarding in many ways.
My patients have taught me profoundly valuable lesson that I use daily to care for myself and those around me. Nursing to me is a healing art that takes great compassion, understanding and patiences. LOTS of patiences :).
In the world of disease/illness, what I have come to realize (now that I am the patient and not the nurse) is that we know so much and yet we know so little. Therefore it takes a great amount of resilience and patience to keep moving despite the unpredictable nature of our lives. Jacquie demonstrates this beautifully- KEEP MOVING FORWARD as she always says :).
Thank you again for your post! I rarely read the comments section, but I'm so happy I found your message. You sprinkled hope into my heart. It's reassuring to find other lovely people dealing with this debilitating illness.
I am so glad you are choosing to go into the nursing profession and sincerely wish you the best. From your message alone, I can tell your kind nature will be wonderful asset to the nursing family. May you find joy throughout your journey.
Good luck fellow CP warrior!
Sorry that you had to go thru all that. I totally empathize with you, I have those anaphylactic moments too. Last one happened while on vacation in AZ, in a reaction to being exposed to cats at a family members home. I felt so embarrassed but then realized its beyond my control. If anything, we are harder on ourselves than anyone else can be. You just need to get rest, and let Judd pamper you for a bit.
Hope you feel better Jacquie
So sorry that that happened to you. I'm glad you're okay. You are one strong woman
i’m so sorry this happened. :( how long did they end up keeping you?
I am told "I am too sensitive" and ya know what that's ok with me. I battle the up's/downs of having a rare autoimmune disease like you and lately I realized I still have problems admitting to myself that I have to pace myself more. I also for some reason say "I am sorry" excessively and I think half the time I don't even know I'm doing it. You are brave and encouraging or at least I think you are. I subbed a while back because I was trying to find people I can identify with and the rawness of your life and the unpredictability and the reality of what we all go through with an immune disease. Don't be so hard on yourself. I've been in bed for over a week now because I went out to a concert and I tried to act like I could keep up and I did keep up but then I paid a price.Its lack of control for me and I get scared and for some reason my inner dialogue can go from okay to severe anxiety and I get very emotional. I now realize there are some things I really have to prep for or just say no. It's a learning curve. Much luv, you are doing awesome! ✌️💕😉
i hope you're feeling better. sending all my love to you and hippo!!
Thank god your ok god is food I also hope your best friend Janice’s is doing will ro miss watching her you tube but I understand why she had
It hurts me to hear you having a hard time 😔 I think I understand how you feel. I have severe Ehlers-Danlos syndrome, epilepsy and Horton’s disease. I can never predict a day in my life really, but I have learned how to cope with life. I am always optimistic and try to not feel too much guilt when I don’t have the strength to get out of bed. My youngest child is 10 is used to have a handicapped mum (I need a power wheelchair )
but still I the guilt is there sometimes. Stay strong! 💪🏽
You are so strong, Jaquie. We are here for you.
I truly hope they figure out how to help you with minimal to zero reactions , I truly want this for you ! You are such an amazing beautiful soul ❤️
I'm sorry Jaquie that happened. But things happen that we can't control. I take seizure med. But I can still have seizures depending on how much stress I've been through and med reactions. Please don't feel embarrassed. Hope the rest of your visit with family will go smoothly. Praying for you girl.
Jaquie darling, allergic reactions can come out of nowhere! This was NOT your fault, cariad. G-d is watching over you and we’re all holding you up with our love and cheering for you. This will settle again after a few days xxxxxxxxxxxxxxx
Oh no! I hope you get to feeling better soon. I can't imagine how the ups and downs of your health must feel. Thank you for sharing your story, I think you are amazing and so strong! Watching your story has been very inspiring for me. Keep your chin up, you've got this! I am glad you have such supportive family. I love you, Hippo, and Judd and I love watching your channel. Sending love, hugs, and positive vibes from Plano, Texas! 💜💜💜💪💪💪
I’m so sorry you went through such a very tough time! Feeling emotions that aren’t “rationally warranted” is completely understandable, especially when you’ve been such a trouper and have tried so hard to make things work for yourself and those you love. I so wish some people would support us in such emotional struggles, even if they can’t understand them fully. I’m glad you were able to get in touch with those emotions; they are valid - very hard to ride out, but valid nonetheless. Please be kind to, patient and gentle with yourself - Easier said than done, I know. Wishing you continued healing, peace and joy. You deserve absolutely nothing less.
Great reaction from the Fam!!!
sorry that happened to you on your vacation with your family. At least you did not have to stay in the hospital for a long length of time (like days). Hope you are feeling better and will continue to feel much better.
I’ve recently found a new way to look at life. I too struggle with chronic illness but I’m positive that I will be healed. I can’t fully explain it but if you watch “The Secret” on Netflix I’m sure you too will look at your struggles differently.
Please let me know if you do watch it.💕
It's very easy to feel like you ruin things....I do the same thing. I got to where I wouldn't be part of any kind of family outing due to not wanting to ruin anything. I am trying to work on that because family time is precious.
I give myself 1 hour to cry and get mad and then I stop. It works for me because I can get sucked into depression that I let get out of hand. BIG hugs to you ❤️
Aww Jacquie iam so sorry your unwell I hope you feel better soon it is natural to blame yourself when your feeling unwell it is definitely not your fault I really hope you get better soon and things get back on track love you Jacquie
I’m sorry, Jaquie. If there’s anything I can do, let me know. I love you. ❤️
And you have nothing to be ashamed of, Jaquie. Your health is nothing you can control. There’s no reason to be embarrassed.
I adore the way you and Hippo are so attached to each other. Jacquie I hope you feel better. Godbless you. Pls hug Hippo for me. ♡
I'm so sorry!!! Thats horrible!!!! I hope you're feeling better. You are so strong and such an inspiration. Stay strong and keep moving forward. 😁😀😁 Sending love and prayers always, Abby. 😘😘😘
With everything you have on your plate, health wise, I would be concerned if you didn’t have times of frustration and anger. Acknowledging and dealing with them will get you through everything you face. Keep strong!
So sorry you had to go through that. All your emotions are justified and normal in your situation. You are a beautiful strong person and you are so generous to share your situation in a public forum. You are helping a lot of people.
Praying for you Jaquie. I hate seeing you feel like this, because I know what it feels like. But all you can do is take care of you, and your wonderfully supportive family will always be there for you. You are so inspirational.
Thankful for your understanding, wonderful family and that your allergist is trying to help you come up with an answer! I hope you get one sooner rather than later. Lack of energy/things going not-so-great is definitely hard, especially in front of people. Don't feel ashamed to be embarrassed. You're human and you're going to have human emotions. That being said, you're human and sometimes, that means your body acts in a way you don't want it to. Like your family said, being chronically ill isn't your fault. Gentle hugs and spoons!!!
Some times it is one hour at a time. Were you able to figure out what set you off? Glad your ER trip was a quick one and not a stay. Head up kiddo! You handle things really well and keep yourself in check. Just don't forget to every once in a while laugh at yourself. We all do things that are goofy. It helps to be able to laugh! Enjoy the rest of your visit. (and hug Hippo for me! I always want to kiss that adorable face!)
I’m SO glad you made it through that anaphylaxis!! Such a terrifying experience!!! We are cheering for you!! Hang in there, I’m thinking of you, sending gentle hugs your way, and lots of prayers. Please try to be kind to yourself-you mentioned you knew it wasn’t your fault what happened, but please try to believe it!!
Hugs to you an Harlow. ❤️🙏🏻❤️
Praying for you feeling better soon