Timing Mast Cell Treatments to MY Benefit (1/22/19)
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- เผยแพร่เมื่อ 16 ก.ย. 2024
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--- I wear the mask due to my Mast Cell and Immunodeficiency, it filters allergens and germs. Thanks to IVIG (a treatment for my immunodeficiency), I no longer need it as often as before. However, I still wear it in higher risk areas, such as hospitals/emergency rooms.
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Hope you feel better soon Jaquie. Your hair looks beautiful.
Try putting that product in your hair at night, then sleeping in a messy bun. When you take it down in the morning, it should have lots of volume and some curl.
Katie Common Good idea. Or sleeping with braids in. 😉 Just make sure to apply the product when your hair is soaking wet because the product is activated with water.
You could say that this was a Xol-hair vlog ;) Also loving the hair! I normally plait (braid) my hair when wetish so the next day I can have beautiful mermaid/woodland fae hair
Could you do an updated wheelchair video?
Carmel Baker yea good
I miss Harlow's and your instagrams!!! Do you plan on bringing them back? They were so helpful and help so many people. I also miss your old vlogging style!
Jaquie, I have a question for a possible video. How do you avoid (or address) feeling guilty that your spouse has so much on his/her plate sometimes especially when experiencing a flare up? My medical issues entered into our relationship after we’d been together for several years already. “It’s not what my spouse signed up for” my brain tells me and then I’m overwhelmed with guilt. Especially when I’m unable to pull my weight when needed. How do you treat yourself kindly if you ever feel guilty.
Thank you for the opportunity to ask this.
Lisa Ackroyd Ma’am I know your question is for Jaquie but I’d like give my two cents. You say he didn’t sign up for this? So NOT TRUE. Yes he did and yes you did! Remember your vows “in sickness and in health”. Our spouses could leave, if they so chose but here they stay.
I’ve been married 31 yrs. Over the last 11 yrs, my body has had issue after issue. My husband has taken on a lot of stuff at home. For Love ❤️. You’d stay with him, right?
They have talked about this. Basically, she got sick like this not long after.they started dating and she gave him an 'out', wbich, being the intelligent man he is, rejected. When it came time for him to deploy a few years later, he also gave her an 'out', which she totally rejected! It was tough, but these two are soul mates and Judd is a very responsible man.
I would like it a lot if you made a video about your belief, how and why you belief, etc. You've mentioned a lot lately, about being more active and going to church. That's something really strange for me, because I'm raised atheistic, and I live in Belgium where most of the people don't believe anymore.
Wish you the best and a great adventure with your new home.
First, I love your hair. The video I would want to see if, dating/relationship with a chronic illness, communicating with and between specialists at different hospitals/clinics and more tips/hacks for staying safe at home alone with chronic illnesses like POTS and EDS
Harlo is such a great service dog, she behaves so great at your doctors office. It was a good move to go a little earlier, I got some direction from you sharing that heads up, thanks. Hope the trip will be ok.
LUS is made for curly and wavy hair. It doesn’t make your hair curly or wavy. If you want your arm to be completely relaxed, bend it at the elbow across your waist and hold it with your other hand. From a curly haired retired nurse. Good luck.
It is weird, but ppl taking BPs have no clue these days now to do it properly! My midwife would always his my bent arm against her side,which was very comforting. As opposed to the last two times I was in the WE I Dr the past month where they put it on my lower arm! I was in there for nerve pain in my left arm and didn't even think to have them use my right arm. Boy, was that a mistake! Plus, it squeezed so hard I thought blood was going to squirt out! The second time, I had them use my right arm! Lol!
I thought your hair looked great! It’s always nice to find new products to make our lives easier! Xolair is some great stuff isn’t it? I get mine every 2 weeks. They won’t use my arms though. They do them in my abdomen. They also won’t do it on the same day as my ivig. Have you had any issues doing them on the same day? I love all of your videos! I’d like one that discusses your medical marijuana and traveling. Can you get in trouble taking it with you to a state where it’s not legal? Have there been any problems with it at the airport? I’d also love a video about your hobbies. Are you artistic? Love sports? I’m so glad you are feeling well enough to go to Orlando and get together with family again! Personally, I think that is one of the most effective treatments to ward off depression! I know you do a pretty good job not overdoing it, but remember to pace yourself and not accidentally over do it. I feel fabulous a day or two after ivig and have crashed thinking I could do more than my body was prepared for just because I feel so much better after the Xolair and ivig. Have fun on your newest adventure!
Try braiding your hair in a loose braid while it’s wet, I get a really good wave that way tho that product sounds awesome, I might try it!
I loved the service dog at Disney one. I don't have a service dog, but I am fascinated by them and curious about them, and I love Harlow so much.
This may sound weird, but I would love to see you talk about how you keep such a wonderful, hopeful attitude when dealing with all the medical problems. I am dealing with my own newly diagnosed chronic issues, and my reaction is to want to hide under the sofa until it goes away, which of course it won't. I am having a hard time with this, and you are a real inspiration to me. How on earth do you do it?
Take care of yourself, and thank you for everything.
Blessings to you! Scroll through older clogs to get some answers. CLogs? Vlogs! Sheesh
Your hair looks really cute. Glad you shared because I think I'm going to try it! Love your Disney vlogs!
A couple things I would like to see are 1) how you organize and keep track of your meds/refills/communicating with doctors. It seems like all I do is struggle with where I keep my meds and when I need refills and getting approvals from docs. It’s a part-time job. 2) I would like to hear from Judd how he deals with your illnesses and if he struggles with it sometimes.
It is the same for her! What a misery!
I would like to see a video about your life before you started making TH-cam videos - about medical and nonmedical. What was it like growing up? What were your early years with Judd like? When did you meet Janice and when did she get sick? How was your health as a kid? What was it like being a sick teenager? What was it like as a kid having to have school at home due to your health issues?
Hey Jaquie!
Your hair looks fab! Can Danielle not administer your Xolair injection instead of you travelling to your immunologist? Thanks for always creating such informative content! X
I think that she has to go to the doctor's office because the meds have to be run through the centrifuge (I think that's what it is?) To thin the meds
Omg so pretty with the wavy hair!! I need to get that product! I recently cut my hair to shoulder length, and it didn’t get as wavy as I’d hoped
I think your hair looks great! I may actually try this - ive been wanting more body to my hair.
This isn’t really a medical or service dog video but maybe a tour of your closet? Show us all of your clothes👍 love your videos!❤️ ohh also how you organize your medical supplies
Your hair looks really nice. It can be so hard to look “presentable” when you either have trouble or aren’t feeling great.
It's so good that you are in so much control of your treatment regimen. It's wonderful when you find a doctor that you really trust and get along with. That's also important for a good outcome. Your hair looks great by the way. I like it straight too though. Enjoy your trip to Orlando.
Love the curls. Your hair looks really nice. On dip days keep it simple, I do. Your mum is so lovely! What a bright cheery person she is. I can see where your own personality comes from. X
feel better soon Jacquie! you are so beautiful and strong. keep moving forward!
Your hair is always beautiful I hope your doing better love you so much Jacquie
I think your hair looks marvelous!! That new product worked well for you!
I’d like to see a video on how you stay organised. You mention how you have many appointments, do you have a diary, do you use your phone to put in appointments etc.?
@jessicaoutofthecloset does her hair and makeup and wears fancy vintage clothes to sort of hit back at the world of chronic fatigue and pain! She said curling her hair is good occupational therapy.lol! Not me! I haven't colored my hair in well over a month!
Looking forward to a great relationship with this new doctor! ☺
Could Judd do a day in the life of a police officer? I think that would be cool and great to spread awareness!
Yah and if any police officers can have disabilities as mine does but wants to be one.
Jaquie hair was awesome. I may give it a try. Thank you for your advice re: Xolair. I had my first injection. I was nauseated right after. I thought I was escaping any other side effects. WRONG, yesterday I stayed in bed all day. Just felt horrible, guess mine are a delayed response. I have chronic uticarua, fibromyalgia,asthma,etc. Have a good time in Orlando !
Sarah DRINK CELERY JUICE. That will heal you
My daughter has had chronic uticaria and angioedema since September. Does celery juice really help?
You should look up the curly girl method! I was blown away too. My hair was curly all along!
Have a great time in Orlando! xxxxx
Too bad you are not feeling the best, but hopefully that Xolair shot does the trick sweetie. I would love to hear videos on your spirituality or faith, you mention it but I know you are more involved in church. I would love to hear about that. I bet you'd get a lot of watches too. I know my spirituality and my church are super important to me too.
“Y’all” I love being a southerner
First I love your hair it is cute. Second Harlow with the best on her head Haha that was so funny, I started laughing when I saw it. Harlow is such a great help to you. Love that you can plan your treatments to help when you have vacations or other activities planned. You are definitely setting your self up for a fun and successful activity. Hope you enjoy your trip. Looking forward to seeing your adventures.
Your hair looked amazing. I honestly thought you curled it with a wand but it was just the leave in product! Xoxo hope your feeling well
Try putting the product in when your hair is really wet and scrunch it in to get the excess water out. I recently started embracing my crazy Cuban curls, and it is a learning curve! It can be hard, because I *think* I have EDS, and my hands are kinda screwed up, but I'm sure you'll find what works. I think it looks good!
Your hair is beautiful! Hope you fell better. Have a nice day. ❤️😊
Your hair looks sooooooooooo pretty! Did you put the product in the ends as well? I notice that women who wear that hairstyle never curl the ends.
Your hair also looks pretty when it is not curled. You are just so pretty. My hair is naturally wavy, so when I need to go "out" I use gel and scrunch it. My daughter wanted to know if I wanted to have my hair and nails done for her wedding. I am not wasting money on that. :)
I am still binge-watching your videos until the wee hours of the morning; so don't know what to ask for right now.
Cheers!
I would like to know more about how you felt when you were diagnosed, what where the symptoms that made you concerned, and how you managed it in the emotional part (if I remember well, you were a teenager) and how you accepted that you couldn't do things that teenagers usually do. I think it could also help another boys and girls that are going through the same thing you did! (I know you have talked about it before, but it isn't everything in only one video, and it could help people to find it easier, and also spread awareness to people that doesn't understand what is happening to them, and help them to go through with information and maybe even make them look for a doctor and persist to get the right diagnosis)
Sorry your not feeling well.
God Bless you. I'll keep you in prayer. Keep smilin!
Here's a verse to encourage you.
~ Isaiah 41:10
im coming to Disney world in about a month and I hope I can see you there
I think your hair looks nice straight and curly. Keep trying and see how it goes, maybe you should concentrate on scrunching the whole length of your hair not just the middle bit? That looks like an awesome product and I hope I can get it in Australia.
Hair looks cute! That soft tossed loose curl look. We used to call it beach hair.
Thanks for sharing.
Somedays I struggle getting dressed just as much as Harlow lol
Love your hair :D
I'm curious to know about the fistula in your arm. Like when & how will it be accessed? How does it work & how it feels running fluid. 👍❤
Lisa Camacho there was an update recently, she goes over how it’s going and when they’re planning to use it (:
- other ideas : jan jan & Jaq Jaq videos, how school is going videos, introduction to janiece's dad and the maybe meeting judd and your dad. I don't know hair product hacks, medical equipment hacks, technology hacks.
I love your hair and especially how easy it is! Harlow is such a sweet dog. I’m curious - does she help prevent you from falling or what happens if you fall? After watching your husband help you at the giraffe encounter, I found that I was anxious watching you walk with Harlow. Thank you for sharing your journey with us.
I think your hair looks great! I hope you feel better and have a good time in Orlando. When you go to Disney what do you do with your wheelchair when your on a ride?
Love the hair! Keep on messing around with it, that’s something fun to focus on :)
I would love an update on the wheelchair
Dealing with the public at disney? How to interact with the characters and a service dog
Your hair looks fabulous Jacquie...I have poker straight hair too and I just might give that product a try...I will keep yeah all in my prayers as you head into your mini-adveture-fun-part-work-VaCaTiOn! Enjoy! :)
How about another question n answer video with you and jud?
I love you hair it's so nice. I think it will just take a lil to get used to.
Try putting it in then braiding your hair it will give you waves:)
Love your videos
You should do a live again
Which formula do you have? The curly, Wavy or Kinky-Coily? Your hair looks beautiful!!
Hey! I love your channel I have PTSD and Panic attacks. I love this harness and how it has holes to breathe can I ask where you got it?
Your hair looks great!
I love your hair!
Hi Jaquie, I've noticed you wearing a pink "wedding band", did something happen to your rings? Just curious, thanks! Hope all goes well on your trip. 😁🐱👍💕
It is silicone. I don't know why she does it, but our pediatrician does as well. More sanitary for her
Hope the treatments helped and that you are having a good weekend. Just curious, didn’t you used to wear an engagement ring and wedding ring? Why did you switch to the pink one?
Regarding topics. I was wondering if you take any dietary supplements that help with your chronic illness. For instance, due to my diabetes I have problems with my autonomic nervous system and I found that Lion's Mane Mushrooms help with symptoms for this issue (I listened to a podcast with Paul Stamets, who is a researcher that is experimenting on the health benefits of mushrooms). Also wondering if you have tried elimination diet where you try to determine if certain foods tend to make you ill? I know you've been on some wholesome tube feeding products. I saw that changing to a more organic product it seems that your health got better. I also note that the Cannabis products have really helped. Can you tell what symptoms this has most helped? My main interest over the past few years is determining the foods that cause my symptoms to worsen. Since I'm type 2 diabetic and have various issues such as neuropathy, autonomic issues, high blood sugars and low blood sugars I have experimented with the very low carb, high fat diets and elimination of grains. I wonder if through your time of looking into helpful products you have also. I've been a fan of your podcast since you made the videos on the various diagnosis you have; As an RN that really helped me to understand some of my patient's issues and I used the information to better inform them on their journey. Thanks for all you do.
Do you have any issues at Disney that are unique that a SD team should know?
She does! It is not as hard as it might seem. Flip back through older videos. You may have to go back a ways
I wash and sleep with two braids =) mine don't wave much either
9:30 Have you had anyone such as a business deny you access because of your service animal? How often have you had that happen and do you have any videos of any of these encounters?
Please teach how to pick a puppy 🐶
I'm getting a service dog. My #1 concern is Uber. How do you manage your emotions when the driver says no?
Edie Brown say okay and get another uber but call ahead and say you have a service dog.
Are you going to see Janice and Paul while in Orlando
Like the wavy hair style!
At least your hair doesn’t naturally look that crazy. Mine looks like that without using any products lol
What was the name of leave in hair treatment
Have fun in florida!!!
Could you put a link to the hair product?
Love the hair, what is the exact name of the product and where do you get it? I so wanna try that.
Love the do!!
Why don't you approach Disney to be their service dog ambassador? You could make these service dog at Disney videos for them at a fee? Maybe you need an agent? I think you could be marketing your medical videos as well.
I agree! As long as she could do those things on her own schedule.
Does anyone in the heds and pots community have tence muscles and random spasms and body spasms with facial tightness among other weird symtoms I'm not sure if it's eds or the pots??💙
1:48 For a moment I thought I was looking a camel or llama right in the face.
4:03 May the chosen one be worthy of the honor he received.
Hi Jackie, I have a chronic urticaria, and my immunologist told me, about xolair injection, but I am so worried, about the side effects, can you please give me your opinion?.
My daughter has had that and angioedema since September. She's had steroids, Singulair, Zyrtec/ Zantac 2x day, and still gets flair ups sometimes. She also has an epipen since her lips & tongue have swelled but she hasn't needed it yet. (K.O.W.) They seem to happen more when she's run down with a cold or stressed. We don't know what started it and she can't do allergy testing since she can't go off the meds without flare ups. How long have you had this? Let us know if the xolair helps if you do it, thanks.
What is that hair treatment called?? I gotta look this stuff up lol
Sarah ohyeagirl Ditto! I can’t quite catch what Jaquie says!
As far as video ideas, how do you manage Harlow's energy/needs when you don't feel well?
I really like your wavy hair. Enjoy your weekend.
You mentioned in some video that solair can have negative side affects in the long run. Can talk about that?
how and what do you pack for trips?
Hey Jacquie I got a golden puppy a few weeks ago and I am working on training her for the K9 good citizen test. Can you do a video for how to train for some of the skills thanks
MadiM12195....check out her all about harlow playlist
God bless you 💖
I’m in the er again I was here 2 weeks ago
💋❤️💋❤️❤️💋❤️💋
Your hair looked cool but needed more curl/wave on upper half. It just looked weird being flat and then boom, curls lol. And I say that in an honest way, not a bitch way.. I'm sure you know what I mean since you too say things as they are, not meaning any rudeness... Much Love 🙏
You should wear your hair back like in a ponytail and wear lipstick every now & then.
Marta Carrión a lot of makeup is hard to have with Mast Cell activation disorders because you never know what it’s going to react to and makeup, especially lipstick is so close to your mouth and airways that it could be an easy reaction. Putting hair up can be hard with EDS, especially for those with arms that dislocate and sublux easy
Hey there, as much as lovely and sweet you are, but gurl.... That hair is a mess. Hahahahahaaa you should go to your local hair stylists and get it done. It will look great on you
Muhammad Nabeel I think shoulder length hair or like a cute bob would look good on her