Hi y'all! A few people have been asking for my geneticist's name/info. In the past I used to freely share my doctor's information to people in need, because that is the kind, humanly thing to do! However, more than once it has resulted in a less than favorable outcome. People who dislike me (backlash is bound to happen when you put yourself out there) attempted to gather personal info from my physicians by calling their office. Nothing ever came of it due to HIPPA, but it was still quite unsettling. I know there are GOOD people out there who can benefit from this doctor, I just have not decided how to go about it yet. It is downright horrible that some nasty people are making things hard for others, but that is just the world we live in. I am still thinking over how to approach this because I desperately want others in my situation to have competent doctors. I am just caught in a tough situation and I hope y'all can understand and respect that as I try to figure out the best way to go about this. Thank you!

@abbypeterson274

5 жыл бұрын

Maybe making a list of doctors including others that other people have had good experiences with and reccomend. Not labeling who's doctor is who's.

@rachelg.4892

5 жыл бұрын

we understand don't worry about it

@susanlevine779

5 жыл бұрын

Wow! People can be really mean. What's wrong with them???

@emmeison3028

5 жыл бұрын

Totally understandable. Take care of yourself

@ebonylowe6171

5 жыл бұрын

you have very good boundaries. I would just tell people to do their own research on different rating cites, asking questions, getting referrals etc. I would not give out my personal doctor information to anyone online.

Being someone who works at a healthcare company who makes and fills IV bags is interesting and makes me feel better about working so hard on putting these bags out. I’m glad to work on life changing things that people like you depend on. It puts a face on the bags.

@perissenn

5 жыл бұрын

Iris Hernandez i didn’t think to consider that as a job! What’s the work environment like and qualifications, because that’s something id love to do!

Your geneticist saying that Ativan helps with stomach issues is something I’ve been using off label for YEARS. I have severe issues and won’t digest, it messes with my heart rate and makes me feel terrible. Taking Ativan relaxes my stomach muscles and it fixes the problem within 30 minutes. It’s hard for doctors to believe/understand but hearing you say that, I can show my doctor who does believe me and does prescribe it but I’d like it out in my records should something happen to this doctor/patient relationships

@albanymountainhomestead

5 жыл бұрын

A handwritten or typed letter that explains what you just said and your hope's and concerns. Then mail it to your doctor. Anything doc receives by mail legally must be added to your chart. I hope this helps.

@moontoad6412

5 жыл бұрын

If you need it in your records, your doc should put it as you have problems with muscle spasms that interfere with digestion. They should put the meds you've tried (plus the non med things you've tried) so you have a record for insurance. They should say that ativan works well for you, you're on a stable dose, yadda yadda. I don't know that muscle relaxation is an off label use for benzos as they have been known to be muscle relaxants for a very long time.

I love your videos so much. Because of your advocacy I have gotten diagnosed and am an official zebra! I can't thank you enough for how much you have helped me. I hope you continue to feel better.

@rhiannonrogers9891

5 жыл бұрын

furyfox13 someone with a rare disease is known as a zebra, because doctors are often told, ‘when you hear hoof beats, think horses not zebras’, this is because they shouldn’t jump to rare things (zebras) as it’s likely to be a common thing (horses). But, zebras do exist. Hence if you have a rare disease, zebras are often used as a symbol etc.

Can we all just take a moment to notice how cute Harlow is

I just purchased something from your housewarming registry, and it did not let me leave a message. I just wanted to say thank you for all that you do. You have helped so many, including me. I hope you enjoy your new home. 🌻🏡💗

Jaqui I totally understand your reasons in your pinned post for this vlog. I feel it should be the case not only for your privacy but also professionally for your drs. I have various autoimmune conditions, I don’t generally divulge my drs as people can be extremely negative if they have medical treatment tunnel vision and don’t accept any other forms of treatment and can be verbally cruel. It is good to keep some details of your life especially with your hubby’s career and for you mentally. Neither of you need to have trolls in your life. Stay strong and do what you think is right for you, Judd and that lovely Harlow. Please to see you looking better and stronger. I know that can change in an instant.

Jaquie you do such an awesome job explaining things, without taking forever to get to the point. This was a great vlog!

@christinahammond9146

5 жыл бұрын

Agreed. She knows how to summarize information succinctly.

Hey Jacquie. I just want to give a huge thank you for getting info on Mito out there. 3 of my friends (they’re sisters and brother) all suffer from mitochondrial disease and constantly have to come down from dallas to houston for testing. The 3 of them are doing better than they ever thought- The oldest is in his late 20’s and they didn’t think he’d make it past 18, Abby, the oldest girl is engaged and planning to move with her fiancé, and Madi, the youngest is focusing on LGBT rights and stuff :) thank you again for putting more information about diseases and illness out here. sick doesn’t mean i cant do anything, and you helped me learn that! -A fellow POTS, AMPS, and gastroparesis warrior and her service dog Bailey 💜

I'm so happy for you that your new geneticist is so on top of everything. Its amazing when you get the good ones! Loving to hear how things are improving already.

I love seeing you push forward and advocate for yourself. I pray you feel better and stronger every day. God Bless.

You are a plethora of knowledge and kindness Jaquie! Many good things happen for you ❤️

It's so good that all these supplies can be sent to your home. They fit in the mini fridge perfectly. You are such a sweet person :).

I’m so happy that you are finding treatments that are helping you. Hope you have a great week.

I have only been following your videos since January. I am continually amazed at your strength on dealing with being chronically ill, dear Jacquie. You are an inspiration...I am happy you found a geneticist who is able to help you. God bless you, Judd and sweet Harlow.

How cool! I love hearing about you doing better! So glad you are getting more treatments and help to support your body! :D

It is so good to hear that you had 1) a good experience and 2) that this physician is taking things seriously and knows his stuff. I hope that things continue to go well for you, Jaquie. All the best to you, Judd and of course, Hippo! xoxox Heather🇨🇦

Great your finally finding the right treatment that works for you I hope things only get better for you Jacquie love you so much

Wow, you and Harlow are looking really good! Hoping and praying D10 works well. Amazed at all you have to go through and your strength!

Hi there! Been following your channel for quite a while, but I'm a quiet soul that doesn't post too often. Started watching because I also use a Service dog, but for mobility little issues. I also use a chair or mobility scooter. :) A friend of mine lost two of their four children to mito mutation conditions, and I didn't understand much about it until I started following you. Just wanted to thank you for being so open and informative about your conditions. It's helped me understand a lot better. Also I have to thank you for being so humorous and bubbly, even when you're not feeling your best. It's the same attitude I try hard to keep, even when I'm in a huge amount of pain, and I'm dealing with the 10th drive by Petter of the day on my service dog. Thank you for being so brave, you're young enough to be my daughter, and I hope you won't mind if I think of you as an honorary adopted daughter. :) Hehehehe. I tend to adopt many young ones I find myself caring about. No harm intended. There are times I know you're hurting, and I wish I could just offer you a gentle hugs at times.

yay Jaquie I'm so happy for you! also you're looking much better!

I was waiting to see this video :) Glad to see the change to be working so far :)

So happy for you. If always feels good to get someone who really understands. Hi Harlow

I’m so happy to see where you go with these treatments

So glad you have dr that is helping to control the main contributor to you chronic illness. Hopefully as time goes on and you get some things under control other issues will get less also.

I'm so glad your mito is being focused on! Mito is definitely rough but L carnitine definitely helps as well. You got this fight with mito!💪🏻

I really hope the new medications are going to help keep the mito in check and give you a better quality of life. You're awesome! Very interesting following your journey and learning more about chronic pain/illnesses. I got a few chronic conditions myself, but nothing that causes daily pain as long as I take my meds, which I'm grateful for. But I got family members that deals with chronic pain and it sure takes a lot out of them fighting it every day.

Just be careful with the hyperglycemia that can happen with D10. Prolonged sugar could cause a medication induced Diabetes. Risk vs. benefit definitely though, not sure how long this treatment will be. Look out for signs and symptoms of high blood sugar: thirst, frequent urination, blurry vision, headache, weight loss.

@estherbarnett-krause3494

5 жыл бұрын

Hmmm, interesting information I like researching this sort of things .

This is all so incredibly interesting!! I never even knew that mitochondrial diseases existed. You're doing so well to educate people!!

Wow!! Your new geneticist has so many great new ideas to try and help you, fantastic. :D

Glad to hear you're finding some answers. It's good information.

You are looking stronger and more hopeful! As someone who has moved recently I saw your boxes and thought free, sturdy moving boxes!!! When you start packing start slow with out of season stuff first and label everything- what's inside and what room you want it in in the new house. We used color coded duck tape different for each room and child. Just a thought. Have a super day. 💕

you've gained so much healthy weight since the beginning. you look amazing, and I hope you're feeling better than you were 2 years ago.

Wow you have a wonderful team on your side. I recently switched medical insurance. So far I've been very pleased with my care. We'll see when I start needing extensive tests. With my previous insurance I had to do a lot of research and suggest stuff to them otherwise they were OK with maintaining my health as it is.

Great to hear things are working better for you

I'm so happy you're getting treatment. Especially since you've been to two other geneticists. Why didn't any of those doctors do anything to treat the mito?

You are awesome Jacquie and have a great day

Please pay attention to the expiration dates on the fluid labels (not on the bags, but on the label stickers on the bags). If things have been added and/or air has been removed from the bags, they’re typically only good for a week, even in the fridge. While you may have enough bags of fluid to last you weeks, they may not be good for weeks. Also, make sure you’re not running dextrose fluids too quickly. Because they have a good amount of sugar, running them too fast can result in high blood sugar.

I don't have mito I watch your videos for inspiration you are always so positive and I love Harlow. (My daughter has a new service dog).

Feel better Jaquie

Really pray that the new meds work for you x

I'm super glad you are finding treatments that work! I'm really nervous because within this year my doctor has plans for me to have Port surgery, start IVIG, saline infusions, iron infusions, and I will be getting tested for Mito disease as well. Do you have a video explaining what port surgery and port surgery recovery is like? Best wishes!

I was happy to see that you are trying Marinol! I hope your insurance will cover it. I went with Nabilone, which is similar to Marinol. I find it so helpful with my Trigeminal Neuralgia attacks, migraines, all while helping my nausea and anxiety. Helps to sleep at night as well. Excited to hear your updates specific to Marinol, I hope it helps you as much as Nabilone has helped me.

This new regime is potentially so exciting!

I kinda laughed at myself when I noticed that the air wasn’t siphoned out of the D bags. It’s not something i would have noticed if I hadn’t been watching you for awhile. Love ya always!

I have MITO too! (Specially complex 1 and 3) I was diagnosed when I was 9 and have been on a cocktail of meds ever since lol. But I relate to your videos sooo much! I don’t have a port but I had a G-tube (which I got out in March of 2018, yay!) I never got a GJ tube but it was considered. Also is your GJ tube a mini? Mine was a mini but I know nothing about GJ tubes😂

Those box's will come in handy when you move , You can put your bathroom stuff in them or smaller items

Interesting Jacque. Have different medical issues but also a " medical nerd"......I'm sure you'll benefit and see some positive results!

AgainI , I love your new glasses. Anna I'm in my lounge pants ALL the time as long as I'm at home. My skin is extremely dry and sensitive and so lounge pants are nice since they're soft.

@melaniemcaulay9748

5 жыл бұрын

who is Anna?

I wonder why the two geneticists from Mayo and Shandy didn't prescribe treatment? Glad you found a doc who will!

Just a hint/tip-Atavan tabs are usually very small-especially if they are a small dose-& they do dissolve really easily/quickly in water/saliva-so if u do need it quickly/don’t have the things for ur tube/don’t have easy access to ur tube (ie out + about), you can put it underneath your tongue-it’s usually absorbed super fast that way-& acts really, really quickly.

When I first started marinal my pharmacist didn't tell me it needed to be refrigerated or anything. The paperwork didn't say it either. I just noticed the effectiveness going down through the month. Then they gave it to me in the original bottle which said it needed to be refrigerated all over it. I was so mad.

Hey Jackie, a lil fact is lorazepam is also used as epilepsy emergency medication, no use to you but it's all information I guess. That's why it helps with muscle spasms 😊 hope your doing well glad your slowly but surely making progress in your journey! Xx

Hey Jaquie- is there a way I can contact you directly? I am really struggling with my chronic illnesses and I need helping finding ways to talk to my doctors about getting a port for infusions that they will listen to. Right now I am having trouble getting them to even consider it because of the risk of infections and such but with all the research I have done I would like to have at least a more open and clear conversation about the pros and cons. I would appreciate any advice you can give me!

So I have see this on a few comments and people are commenting WHY don’t people just pick up the phone and call their PCP and ask for recommendations .. I’m guessing they do not suffer multiple issues or chronic illnesses .. Picking up the phone and requesting recommendations is not that easy.. often times doctors are incentivized to give out other doctors information. Also, just because your doctor gives you a name does not mean they know anything about that doctor .. I hate to say but being someone who suffers from chronic illnesses I have fought tooth and nail to find doctors to treat me correctly.. it’s always always beneficial and refreshing to get recommendations from people who suffer the same or similar issues because they will not steer you wrong .. it’s exhausting losing pay having to take time off work to go to new doctors .. and paying them parts of the visits that your insurance doesn’t cover .. so if a person can get a recommendation it can in times be life changing ... I spent about an hour searching for geneticist in or around the area she mentioned because I also live in Tampa and I would be willing to make that drive to find someone to help me correctly.. when I was 34 my life changed drastically and I’m still fight to find all the reasons after watching her last video I felt a surge of hope and thought to myself maybe it’s time I see a geneticist and if there was a way to start with the best I would love that .. so while people truly suck ... and it’s scary to put your details out there .. if I would in the position and I thought I could help one person I would .. I do ... any and every time I find a doctor a truly believe in I will share him or her with anyone who needs a doctor of that specialty .. I know those of you making the comments about us just picking up the phone have to ill intentions with your comments but I hope at some point you can see it from a different persons viewpoint .. a person who is suffering ..

I got a groshong placed, because I also stay accessed everyday. So I have a power port on the left and a groshong on the right. I'm grateful I don't have to access my port anymore, but I literally had 3 nurses refuse to use it when I went to the er the other day, they said they don't know what a groshong is! I couldn't believe it!

Dextrose and saline drips are used a lot for people with electrolyte imbalances and lack of nutrient absorption. So that makes sense.

Do you have reminders on your phone or something for all of this? 😂 I know it’s your daily life so it’s routine but I’m 8 months into birth control and I still need my phone to remind me to take it everyday. If I had so many daily and bi-weekly things to remember I’d be screwed.

I remember the banana bags. That has changed too?

I can't do dextrose solution, last time I had a staph infection the ER gave me the antibiotic in it and my BG went into the 500 range and now they have me as a diabetic even though my Endocrinologist says I'm not really a diabetic just BG issues due to long term steroid use.

My son has Mito, MCADD to be specific, and he takes Levo also. He used to take the liquid but we switched to pills as he got older, obviously each person is different, but I wasn't aware of the problem with pills remaining whole. The pills we have dissolve very easily, so perhaps that's why we haven't heard this before. But he takes other meds also so I'm going to look into it. Thanks for the info. He has to have his level check to ensure he is taking the right amount. Biggest issue we found with the med regardless of the form is the side effects, the meds smell and that smell can come out in body odor/ sweat, especially in the summer so that is something to be aware of.

Got the IV's all tucked in!!! Just kidding. I'm really glad you are doing well with this new physician.

I've had d10 and d5 infused with insulin on a 24 hour insulin infusion when I was in hospital with my t-1 diabetes it helped heaps with my blood sugar control and it felt like I was almost normalised thought to share my experience with it 😀

The dextrose solutions have to be refrigerated because glucose can attract bacteria in room temperatures. The cold temperature helps to keep bacteria from forming! Make sure to change your tubing every 24 hours to keep it clean!

How long have you had Mitochondrial disease?

Jaquie I have a question for you so I take Ativan as well is it not for Anxiety, or is it just a muscle relaxer??

Do you know if mito is common in people with MCAS, hEDS, POTS and GP? I have the last 4 things and suspect mito as well. I just feel like I’m nuts after so many years of doctors treating me like a mental case.

@chronicallyjacquie Can you please tell me the name of the geneticist that you saw? I would really appreciate it. Hope all of this new treatment helps you & makes you feel much better! 💖

@AirellSkye

5 жыл бұрын

You may want to go read her pinned comment she posted about an hour ago. That will explain things.

Please make sure you get a little salt now that your IV fluids don’t contain them and you’re increasing the amount of volume. When your body eliminates water it also eliminates sodium with it. You don’t have to go crazy or anything-a few salty snacks will do it. That was the function of the 1/2 normal saline in your 5% dextrose. But don’t be upset or anything, you can just as easily get salt orally.

@Jane-qg6sj

5 жыл бұрын

She's still getting salt with the saline flushes. And she flushes every single time she administers medication.

I’m just curious. When you were diagnosed with GI issues, did you have any nuclear test? Did they come out normal? My GI issues are terrible but my Nuc Med test came back fine.

I think I would rather throw up my meds than have them go straight through me. I don't even attempt to look for the numbers!

They put me on Detrox everytime I'm in the hospital with pneumonia with my Hypogammoglobineamia.

I was on marinol and it knocked me the heck out. I was totally useless

Dronabinol helps my nausea so much but I seriously feel the "thc" effects of it

Hey! My birthday is tomorrow and we are celebrating it, I wanted to wish for you. What should I wish for?

When will you be able to use your arm for your medication

@greeneyes12346

5 жыл бұрын

I am interested to what you are talking about.

It’s interesting about not breaking down meds because when I have a migraine, I vomit up the pills whole. They do t break down at all.

I have been given ativan for nausea many times.

My ra has gi ussues bcs of poor motility. I have muscle weakness all over and my gi tract. Im on a no carb, simple food diet. It helps.

Why not use the IV form of Carnitine?

Does anybody else in your family have these medical issues?? Or did this pass from your mom or dad?? Hereditary?

Lots of people with EDS have gastroparesis or al least digesting issues; does it mean that they also might have a mitochondrial disease? Or are youre digesting issues partly due to EDS, and partly to your mito issue?

@ChronicallyJaquie

5 жыл бұрын

A combo of both. Mito and EDS can cause dismotility. I had a GES that showed the delayed emptying and resulted in a Gastroparesis dx. But, it's caused by my genetic disorders. But my geneticist said motility can be more unpredictable with Mito.

Hey biochemistry major. Just wanted to share something about mitochondrial diseases and potentially having children. In the UK it’s been green lighted to start trials on 3-donor babies. Basically a man and woman with mitochondrial mutations want a baby but don’t want to pass the mutations on. A 3 person a woman with healthy mitochondrial DNA donates an egg. Her mtDNA replaces the moms damaged DNA then a surrogate can be used so the original parents can have a child without passing on the mutations and that it biologically theirs. The amount of dna the third person contributes is small so there’s typically no phenotypic effects!!

Do you have a generator in case your electricity goes out? How common is it for electricity to go out in your area? I would hate it if the electricity goes out and you lose all of your refrigerated medication. How would you transport refrigerated medication if you had to flee for a hurricane?

@aim-to-misbehave5674

5 жыл бұрын

Jaquie has a whole video on her Hurricane prep (under that title, I think) on her channel if you want to check it out. A big part of it was evacuating her area and going to a friend's house that was less at risk, but she talks about generators and meds in that video as well.

@heathermartin9971

5 жыл бұрын

She uses an insulated bag and ice packs......as for hurricane issues, there's a couple of videos posted on her channel that shows how she handles hurricanes

What happened with your arm vein pls give us an update when you do start to use it

@ChronicallyJaquie

5 жыл бұрын

We are already using it. I am not ready to update because having Judd learn to access it was really scary for me, NO IDEA WHY because he is so on point with all my care. Maybe because it was new and I had some painful post op issues? In a few short weeks we should be using it regularly and then I will feel comfortable giving a thorough update. :) Thanks for your understanding and patience!

7:39 You got 4 *boxes* rather than 4 *liters*? Yikes!

11:56 They are tucked into bed!

Duodenum is not spelt with a J. J tube is the shape of the tube that goes to the Duodenum

@ChronicallyJaquie

5 жыл бұрын

My tube is a button, not shaped like a J. It is called a J tube because it goes to my jejunum. :)