🤔 Is My Heat Intolerance Getting Better?! | Dysautonomia 💙
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- เผยแพร่เมื่อ 3 ต.ค. 2024
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just seeing the beginning of this video you at the beach in the water enjoying time with judd and harlow made me tear. your treatments have made you come a long way from even a year ago. constant hospital visits, constant tube feeds, not cleared to drive, constant flare ups. and it’s just awesome to see you’re on the path to living a much better life with your chronic illnesses. so much power and love to you and your family! ❤️❤️
Love y’all! Glad your heat intolerance is getting better, y’all DO live in Florida after all so it’s good you can potentially enjoy the summer weather more
I am so glad your improving so much! It's so nice to watch your channel and see you smiling more often than not feeling good. Your quality of life seems to have grown abundantly. I'm so happy for you!
Hippo is such a cutie! I have a redbone coonhound beagle mix named Lucky. She may not be a service dog, but she comforts me like no one else. I’m a fellow chronic pain warrior and she makes me feel so much better. She stuck close to me after major surgery and kept me safe. It’s like she knew I needed it.
You look beautiful! This gives me hope that my heat intolerance will get better too 💗 my favorite thing is to be outside, and I hope my mast cell, pots and heat intolerance will improve enough so that I can enjoy that again!!
I have dermatomyositis and I also have heat intolerance. I live in south Texas, so that means I'm inside in the AC a lot, have portable fans and cooling towels handy when I am out and about. I'm so glad that your heat intolerance is improving!
Light purple looks so good on you jaquie!!!! It also makes it look like you have lipstick on???😂😂😂😁😁
That color looks so good on you Jackie the lilac color shirt you have on and you look pretty.
You are looking amazing and so happy to see you having enjoyable times. Harlow is so cute ❤️. Wishing you and your families many blessings, good health and happiness 💗
Hi Jaquie! I just want to say THANK YOU! I have had health issues for several years and have been watching your channel for a little over a year. Long story short, I have POTS and I was able to teach my doctors about POTS to diagnosis me. I have learned to be my own health advocate. Thank you so much!!!! Praying for you!
Heehee! Love the thumbnail of wet Harlow! 😂
I'm glad that you are able to tolerate the heat a littlle better then last year. Love your channel Jaquie. Have an awesome day Jaquie.
I always like when you post Harlow at the beach. I'm glad you're doing better with the heat.
I have CFS and it causes me to have heat intolerance also. Lol it stinks. I live in Colorado and the summers are so hot here.
I'm glad your symptoms are regulating so well!
I am so glad your heat intolerance is doing so much better! I recently found a new church that I like very much and there are summer activities that I want to do with them, but may miss out on! My outside temperature range I can handle (safely, on my own) is 72°-77°F. In Southern California, the temperature can change so drastically from day to day and even from morning to afternoon to evening! My body's temperature guage is just non-existent. I know kind of what you were dealing with, and to now be able to be in the water and outside on a warm day! I am so very glad for you and for your friends and family who care and want to spend time with you on those days when it is warm outside. Judd got back his warm Florida weather so I bet he is happy about that! Also, Hippo could not be any cuter if she tried. I want to thank you for sharing your adventures with us over the years! I has really helped me feel less alone. I am also seeing so many benefits from medicinal cannabis and I am so glad you are sharing that journey (in a state where access is not so easy..) as well. Keep on keepin' on! ❤
Im so happy for you! You have made me so happy and you are so inspiring! You, Judd, and Harlow are so amazing and I know that you are getting better each day!
I’ve watched many a beach Vlogs I love to see Harlow in her happy place anyway I don’t think I have ever seen you in the water Jaquie I am so proud of you and I’m glad that you’re heat intolerance is not so bad keep up the good work give Judd and Harlow hugs for me I love you guys
I also have POTS and for me it actually causes cold intolerance, not heat intolerance! If it's under 80 degrees F (which is a lot of the time, especially indoors), I'm guaranteed to be shivering and uncomfortable. When I have to sit still in a normal room temperature room (or god forbid a cold room) for extended periods, my limbs slowly turn cold and stiff and my POTS starts flaring, even if I'm bundled up. I live in Arizona and when it's hot I find it really healing to be able to go outside and thaw out a bit. So it's interesting to me that most dysautonomia patients seem to struggle with the heat, since I'm almost never uncomfortably hot, ever! Every person's illness is truly so unique. I'm so glad that you've been seeing improvements in your symptoms!! Temperature sensitivity can be so annoying, I know for me it is one of my most disruptive symptoms.
This time last year my MCAS was really flaring and my POTS was also really terrible. I’ve noticed a little relief this year from the heat intolerance issues: tachycardia still but not as debilitating. I’ve also put on a little more weight and my cardiologist was telling me my rapid weight loss caused by the flare was making the dysautonomia worse. I live in southern Louisiana so, I agree, it will be a few more months until I can definitively say my heat intolerance is going to be better than last summer.
So happy to hear you are doing better Jaquie! It’s the little improvements like this that make such a difference in our quality of life. 🤗
Watching Harlow having a blast at the beach makes me so happy...good GIRL
I’m so happy for you being able to do more. I’m happy for you, Judd, and Harlow.
I didn't immediately realize the stuff at 2:55 was sped up and I was terrified Harlow was out deep in an insane current
You look beautiful today Jaquie. I think the beach excursion was good for you. I love your lip gloss and your shirt. I think lavender is a good color for you.
I find the heat bothers me more since I had heat stroke when I lived in Arizona. My doctor actually yelled at me and told me not to do what I did ever again. And I haven't. I can't be outside working very long because I can feel the effects much sooner and know I need to go inside to cool down. Doesn't take much anymore. Glad you can tolerate the elements better. It sucks when you want to do things or need to do them and know your body will betray you and not allow you to do it. Be careful with your footing in the water. Not fun falling down even in water! Thanks for sharing more of your adventure with us. How is the house coming along? Haven't heard for awhile unless I missed something. Will have to go check your videos and see.
Hey Mary! Did you ever have any type of treatment for your heat intolerance? Mine started from working out and exercising in 100 degree weather in Texas plus an extra 20 because garages get insanely hot. Ugh I seriously regret this so much...I have been trying to figure out what is wrong with me because I immediately start feeling it as well. Just 40 minutes outside in the smoldering heat, I start feeling panicky, short of breath, a collapsing feeling, sort of disoriented, and confused. Been to so many doctors and they are just brushing it off. What all have you done or taken at least that has helped?
So nice to see you enjoying yourself ❤️
Thank you. You have no idea how much that cheered me up!
Your amazing as always love you Jacquie
3:20 You better believe I did!
6:32 Judd? Got a pair of scissors for her? ;-)
I'm so glad to hear such good news from you!
So happy for you and enjoyed the excitement about being on the beach.
Glad to hear that you are doing well
Glad you're doing better. Due to my chronic migraine I'm the opposite and am cold sensitive. Air conditioning in places is a problem for me. Going from one extreme temp is a problem too. I've almost passed out a couple of times.
I am so happy for you. Loved watching you guys at the beach. I have RA and most people have a hard time in Winter but I could just be in sweats and a short sleeve t-shirt in the snow. I started working in November and I was fine until the last few weeks and I realized that 58 degrees is the perfect temperature for me. Any warmer and I go into a flare, swelling, pain, stiffness. Doctors tell me I am nuts. So very frustrating!! I live in California and I don't know if I can keep my job when Summer hits and it's over 100. I just tell people my body doesn't regulate it's temperature. There has to be a reason for it. Thank you so much for this video!!
Florida's weather has been incredible this spring. Glad you got out and enjoyed it. Im down 75 in Naples.
you’re glowing in this video!
We don't know what kind of dysautonomia I have, so my doctors just say dysautonomia or autonomic neuropathy. In any event, the heat has been my enemy since BEFORE we knew I had any chronic illnesses at all. I was just that kid throwing up, passing out, in general burning to death while everyone else had a good time. I was also the kid rocking Raynaud's the second the weather got too cold. Seeing you enjoy the beach is amazing! It sounds like you've started getting more benefits of infusions etc., as you've worked on treatment changes this last year or so!
I too thought that i would never have an exact confirmed answer for why my autoimmune flares didn't happen sometimes when in situations that were extremely high risk. It turned out to be simply that the wind was blowing in the right direction. No pollution no mast cell activation.
That's so awesome that you're doing better. It's so wild to me that you can get in the ocean right now. I live in Newfoundland and if you got in the ocean in April you would have hypothermia in minutes.
So happy and excited you are making such great progress! And loved the clips of ya'll playing with Hippo at the beach.
💙💚❤💛🧡💜 🐱🐾
So glad to hear that your heat intolerance is improving! Heat intolerance is so tricky I don't have POTs but my thyroid is messed up so I am always too cold or too hot.
I live in NYC and the summer is brutal with the temperature and humidity & then the heat index could feel like 100 degrees.
Quick question: Is it the heat or the humidity that bothers you more? I’m also very hot/cold sensitive, but I think it’s primarily the humidity that bothers me. Meaning, our winters are humid instead of dry like snow country. Humid cold gets way down in your bones & joints no matter how many layers you’re wearing. During the summer, because my window faces east, I start roasting in bed as soon as the sun peaks over the horizon. And that’s with black out curtains, 2 fans, & the a/c at 72.
Another question for not just you, but anyone who has autoimmune & chronic pain illnesses: Starting on Monday, I’m starting a new treatment I’ve never done before - Ketamine infusions - that could, potentially (hopefully), help my chronic pain, depression, & anxiety. My docs & I have a feeling it might actually help me walk again after almost 4yrs. However, I’m scared to be disappointed again.
Has anyone else gone through something like this. Perhaps, right before you started Zolair injections, Jaquie?
I love the curly hair! I’m using LUS now too it’s amazing!!!!!
That's One Happy Hippo. :) (my goldens didn't like to swim, go figure.)
You look so happy and healthy, Jaquie!
Awwwe happy Harlow!
I have heat intolerance too, it's awful. I have multiple chronic conditions causing problems so it's not the top priority at the moment but I have talked to my GP about investigating it later on. Luckily I'm happy as a penguin in the cold because my circulation is great, so if I just rug up a little my hands and feet are warm in no time. So glad I don't live in Florida, I'm in Melbourne, Australia where it is hot about 1/3 of the year and then cold (by Floridian standards) for the rest of the year.
Today our high in North Texas was mid 80s and I'm having issues after about 20 minutes. We still have no idea what is causing my heat intolerance or how to mitigate it but I'm still trying to have fun
So happy for you Jacuie. I have heat intolerance but I haven't been dx with pots or anything. Maybe thats why I live in Wi! Lol. Really enjoyed watching you all at the beach . My last two goldens did not care to swim. Weird huh? Are there Crocs or gators in that water?
Jud is sooooo cheeky saying you don’t know how to swim that’s cheeky
Yall look like yall had fun hopefully ill get to go to the beach this summer Harlow looks like she gad fun
the beach looked like so much fun
I'm binging your videos while knitting a scarf.
trinthetrex OMG you have an ace pride flag I’m also ace and aro
Your video made me smile all day :) Thank you very much
My favorite temperature is between 55 F to 75 F. Anything colder or warmer I don't like. In Utah the weather can be cold and Dry or Hot and Dry. If I had the money I would live in San Diego because it has weather like this and their public transit is much better than Utah's public transit. I could see Harlo was enjoying herself.
Looks like so much fun ! Missing summer for shure . Wish the snow would go away tho where I am .
Loved this, thanks for sharing this!!
So much fun. Was this honeymoon island or fort DeSoto? I have been to both. I prefer fort DeSoto as its not as much walking and I can do it without taking a break. Honeymoon island is like two miles walk and I about passed out. I have taken my SD to both though
I didn't know that there was a dog friendly beach off the causeway. I'll have to check it out
Yay I'm so happy for you. Nothing like a beach day to make you 😄
Funny you mention Heat Intolerance which is something I am currently suffering from and I have no idea where it came from. It’s just this...Dr’s have no idea why or how it happened. Did anyone here in the comments take accutane and develop heat intolerance? Or does anyone know how to get rid of it? Had brain mris and no MS . Ugh. It’s so humid and hot today in Texas. Yesterday was our only last cold day
awww look at harlows wet fuzzy face shes so cuteeee
Harlow ♥️
Hi jaquie. So happy that your heat intolerance is improving and here’s to a very happy summer. Harlow is the most darling dog. I’d love a cuddle with her
Btw is judd’s hair ginger? He reminds me so much of my husband.. love across the pond from ireland
Harlow is a cutie love her smile 😎
Yay Jackie...go girl ♥♥♥!!!
Is that a beach, or lake?
Hey jaquie
My heat intolerance is pretty bad, which is why I live in England. I have to wear a really thick spoken blazer as my school uniform and I have passed out LOADS of times because of it
Do you think it could be the new D5 or D10 helps to give more energy when gets needed? Anyway glad you are improving nicely! and now I think Hippo is the nickname for Harlow.
If Judd doesn’t already play disk golf he definitely should!
Where did you find the long leash for Harlow?? I need one for my Shepard!! I love your videos 🤗🤗🤗
sara p I think she said she got it at Tractor Supply Company and it’s actually for horses.
What beach is that? Looking for a place to take my dog.
I’m not familiar with the needle thing in your chest if you had fallen in the water with an open wound like that?
Does any of your medication mske you photosensitive to the sun?
That is a damn good question, sir! I’m curious about this now because I know several of my meds do say you should stay out of the sun.
Hey Jaq, I love watching your videos! I hope I’m not prying to much by asking this, but have you and Judd ever thought about having children? I know with your chronic illnesses and his crazy schedule, pregnancy may not be the best option, but if you’ve thought about would you ever consider fostering or adoption?
Love you and your little family. My SD loves watching Harlow on the TV- he’s a lab and golden cross (@jericaandmilo).
She addresses that exact question in the 5/14/17 vlog.
I bet Harlow crashed after the playing. I love you guys and your vlogs
I think I might have this we have been trying to figure out for ages why I’m always to hot and always get migraines and have really bad fatigue I have all of the symptoms so this might be what we have been trying to figure out
I have a question. At time like this, would you let someone pet Har if they asked?
Grace That’s a good question. I’m curious, too!
Can there be cold intolerance? If it's too cold, my muscle spasms get triggered.
Yes there can be the cold (below 65°f) is very difficult for me to deal with
I was going to ask that! I’m the same with below 65, and I live in the north 😖😭
Cold temps make the nerve pain in my legs worse, so I guess it's a thing?
@@beanythompson1460 yeesh
Absolutely! It goes both ways for me. I freeze under 70 if there’s no wind. If there’s wind & it’s 80 out, I have to put on a light hoodie. It’s completely frustrating because it’s very hard to find a happy medium for comfort. At least here in Florida with the humid cold, my joints lock up real quick & my back starts spasming. I spend winter in a cocoon of blankets & heating pads. 😆
Is that fresh water or salt water I know ya'll live over in Tampa but was wondering for a while about the water.
Clara Mullen Speaking from knowledge straight across to the east coast, our coastal rivers tend to be brackish water. A combination of salt from the ocean & fresh from inland water sources flowing in to the river. Hope that helps!
Is that's the Dunedin causeway?!
Life is good for you now, despite the look on the yellow ball! Lol...
i dont have pots but anything over 78 is the death of me.
Jaq, Can We get more vlogs?
Because of cannabis!
Do u think u will ever get here alive jacket
A life jacket
Isn't it great to live where people vacation?
She looks like Orion! Glad she did bring you a gator or a shark.
She is a water dog!
You have great legs Jaq
Really happy you got out, I so understand those feelings in the extremes of temperatures especially the heat. Blessings.