Feeding Tube Change & Suddenly Feeling TERRIBLE 🤢 (2/18/19)
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My SD wouldn't stop alerting me today in the docs waiting room & when I ignored her because I knew I was ill she'd bark at me 🙈 so I had to sit on the floor. I totally sympathise. Sending prayers ❤
That's so strange, I have dysautonomia too and I got stuck in the bathroom yesterday and had to call my dad for help. I passed out in the shower then eventually made it to the toilet with a towel and then passed out and fell off the toilet. I was so embarrassed 😳 I figured out that it was because my routine got super messed up that day because my cat peed on the floor in the middle of the night so I was up cleaning that instead of sleeping. Guess my doctor was right, routines are super important for dysautonomia patients. Sounds like the break of routine got you too. As always, good job staying strong and getting through it! You're one of the first people I found when I first got diagnosed and you've made everything feel a lot more doable and normal. Thank you for being so committed to posting about your life!
Also I’m not sure if anyone’s told you this but at least I can always tell when you’re not feeling well because you speak tight-lipped as if you’re in pain. I do the same. So once you begin a vlog I can kind of tell where you’re at. Really hope you feel better soon again hun ❤️
I know what you mean I was scrolling through the comments section and I heard the change if her voice and I knew she wasn't well 😭😭😭
I like your glasses. 🤓 Are they new? And I could tell you're not feeling well because you're eyes are a different shape and face up rather than in the middle. I'm so sorry you've had a rough day! Total bummer!
I'm so glad you have Harlow... she's a literal lifesaver! I hope this flare passes soon! You're in my family's thoughts and prayers. ❤️
Peacock is Donny Osmond. Clues: he's been in the business since 5 yrs old. I had a poster of him in my wall. He was a teeny bopper. He wore a wig for Joseph and the Technicolor coat. The coat was rainbow colors. He has a law Vegas show. The guards in the background were doing the dance moves from soldier of love. And he was letting a puppy, puppy love. And I know Donny's voice anywhere.
Also, if you live Neil Patrick Harris, watch Lemony snicket on netflix. I love him in it.
You've certainly convinced me. I was think Neil Patrick Harris, too, but your argument for Donny makes a lot of sense.
Could these changes be, because your doctor took you off pain medications? Did they taper you or make you quit cold turkey? Going off long term pain medications can make you very sick.
Yvonne Kass she said she had a couple doses left.
What a trip 🙁 you amaze me that you handle things so well. Sending love and healing vibes 💚
Did you know if you are nauseous you can sniff an alcohol pad and it works on the same receptors as zofran and helps nausea! Worth a shot when your in the car or need it quick!
Hmm. Didn't know that. 👍
Never heard of that before. I will for sure try it. Thanks for the tip - I hope it works :)
I'm always nauseous so I will seriously be trying this!
This trick is sooooo good, when I wake up horribly nauseous in the middle o& the night in between my zofran doses I use this and I can actually get back to sleep I’ve been using this trick for a year to year and a half or so I just open the bottle sniff close wait a few seconds then I can sleep again!
Alcohol makes me feel more nauseous!
Praying for you & your family.
I too have a chronic illness. You remind me of myself- smile through pain. I cling to healing scriptures. They give peace, joy & strength.
"Worship the LORD your God,
and His blessing will be on your food and water. I will take away sickness from among you…" Exodus 23:25
You can see the joy of the Lord is your strength. You are beautiful & courageous.
God Bless you ALWAYS.
In the midst of the pain & suffering I am so thankful for life, family, friends, pets my home & life's little things! Get strong. All of us pray for you. ❤
The Peacock is Donny Osmond. All the clues point to his long career and his performance as Joseph.
A few things about vertigo that you may already know is that it could be an inner ear problem left over from the flu.
It could be the rare disease called Meniere's disease.
What used to help me is when I would get up from bed or lay back down, I keep my eyes closed and move carefully then when I'm feeling alright sitting up or lie down in a few minutes....I then open my eyes,, in less than a few minutes, but, when your eyes don't see anything the brain picks up movement differently, so your eyes are definitely involved with vertigo.
That used to help me and it still does but very little.
You can try that or try to keep your eyes focused on one object as you're moving and go to the next object gingerly as you're turning or moving in a room... Then close your eyes and try to shake it off with your head, that way if it's the crystals in one of your ears or both ears but usually they say it's only one ear anyway the crystals will fall back to a place that's better and vertigo stops.
Also shake your head, when I shake my head back and forth, I shake it quick a few times if you have to it can minimize the vertigo. Not long head movements just short quick shaking of your head back and forth.
Also don't continue in the movement so like if you're getting up just stop when it starts and close your eyes and slowly laid back down or just stay put.
Have you gone to ear eyes and throat specialist and had the test done?
From those tests they can tell if it's Meniere's Disease or if the little crystals in your ear that has the problem.
Also it can be hereditary at least that's what I've heard. Or you could have hurt your ear to some degree in your life at some point in time, I don't know maybe cleaning the inside of your ear too much could have caused damage sometime in your past?
I've gone to the emergency room after an episode and they wanted to give me medication that some folks take and evidently it will work for them but I don't take it.
Too they do teach you some maneuvers to stop it and there is surgery but first there's some testing that leads up to the surgery.
I chickened out with that because they have to bring on the vertigo to do the testing and I just didn't want to stomach it any further.
Do occasionally any of your ears make sound or a ringing pitch once in awhile even during a blue moon? What I mean is not alot maybe occasionally hardly at all, but there is some ringing at times -
You are one of the bravest souls
I know maybe you can handle all that testing to investigate which you have vertigo.
When you're shaking your head to regain stability think of Shania Twain's song called
"Shake It" i think ....
I don't know all the words to that song so it really might not apply but the part when she sings (shake it off) kind of does , , , then you've got a song in your thoughts and you're not alone. Soon your hubby will be home and you always have your dog with you, that is the most comforting,
the most most most comforting, Harlow.
I'm so sorry for your suffering jaquie. I've been going through hell myself and may have just found some peace about 30 minutes ago when I decided I just need to give in and admit that my life is now laying in bed... -diagnosed with brain disorder last summer. Been getting worse. Treatment options are slim and doctors are still trying to understand this disorder.
Yay Harlow!! Good girl!! I hope you feel better soon! Hang in there girl!! We got this!! 💪🏼
Prayers for you and you didn't have your medical alert button on you? Yesterday would have been a good time to use it and they could have alerted your mom for you. But glad Harlow was able to figure out you needed your phone. I also wanted to update you on me, I found out from my GI Doctor that Mass cells where in the tissue samples from the samples taken a few months back when I had both scoping done in one day. My Genetic doctor recommended getting any test done for aliments that others with EDS have in common in order to help diagnose me. My JRA has made diagnoses of EDS harder to do for me but he and two other Doctors think I have it but Genetic testing for me is in conclusive at this point and his looking at my daughter only proved she could be a contortionist and not EDS. I'll update again soon, your sharing of your health issues has helped me so much when I felt at my lowest as what to do. I started being more proactive in finding if more is wrong that we are only treating symptoms of and not the cause. The Genetic doctor has even recommended IVIG and several other things to talk to my doctors about. Rest and recover, and take things a step at a time!
Hay jaquie hope you feel better soon, ure so strong xxx
You've got this Jaquie! I'm struggling today as well. But I just got approved for saline infusions! I'm sending some of my happiness to you
Excessive thirst is the primary symptom of diabetes, do you check your blood sugar regularly?
How can she have diabetes? She is too old to get type 1 diabetes, and too skinny for type 2 diabetes.
I think it’s an instinctive dysautonomia thing. More water drunk = greater blood volume = eased symptoms. I find I tend to want to drink more on days when my POTS/AMS is worse.
FWIW, you can be skinny and have Type 2 Diabetes.
@@christinahammond9146 Careful, that's an old wives tale, it's completely possible to get T2D and be average, skinny or even underweight. Stress on the body, internal fat around organs and high lipid levels are just a few contributing factors. Overweight are more likely to get T2D but being thinner doesn't make you immune to it.
Hope it's not diabetes insipidus...that's kinda rare, tho.
Prayed for healing for you Jaquie......ugh I hope things will look up soon. xo
I hope you're feeling better Jaquie! Thanks for the update. Take it easy and get some rest :) Also, If you do train Harlow with retrieving the phone I would love a short video on that process.
Donny Osmond is the peacock.
God bless you, dear Jacquie. Hope you feel better soon!
I hope that your doctor figures out what's wrong. Sending love and prayers your way.
Hi Jaquie! God bless you!
I’m getting excited for you as you and Judd will soon be in your new home🥰👏
I hope you feel better soon. I hope it's not an ear infection as I've had vertigo with that like you described. Harlow's a smart girl to figure out that you needed your phone!!! Love her!!!
Oh, and the Peacock is Donny Osmond because he was in Joseph and the Amazing Technicolor Dreamcoat plus another clue showed the angel Moroni, indicating Mormons. There are several other clues that fit Donny as well. I'll discuss them later.
Pat McCoy the first show he had a stuffed puppy in his hand as well. Puppy love is his signature song. He mentioned The Jackson’s...purple,socks.. yep. Donny Osmond
I am sorry that you felt so bad! Vertigo is a.w.f.u.l!!!! Thanks to harlow - she is such a precious, smart dog! Maybe the command to get your phone would really be a great idea as we have learned now! Thank you harlow😍💙!!!
Jacquie, I can't find a way to message you. I recently moved to the Tampa area (Valrico) and have MCAS. I would really appreciate any info you'd give me about doctors and hospitals you use, as you seem to get good care, and this certainly isn't always the case with this diagnosis. I'm not finding many recommendations for MCAS aware doctors in other forums. Thank you.
I'd like to know also
My sister has CP and has a G-tube. My dad has filled the bubble up in the button a few times and burst it. He changes it out for her. He's had to have new one over nighted to us before because of this. Now we have them stock piled. She still leaks around the area because the Drs here won't fix it up because they weren't the ones who installed it. Being on medicaid/care is difficult we don't get the care she really needs. We used to use kangaroo bags to feed her ensure and Pedialyte but now she has crappy bags which tend to break and sometimes her feeding tube attachment isn't working right so it's frustrating to get it all right with the right manufacturers ect.
U need one of those medical alert bracelets or necklaces!!!
Brandie Blakley she has one, though I guess isn’t using it
So sorry you had such a bad day. I hope today has been kinder to you xxxxxxxxxx
Ummm, Jaquie... 1st yaaay Harlow for helping Jaquie... & ummm, are u not using ur medical alert thingy @ home anymore? Just wondering..
Love to all!!😃✌️
Pammy M Sometimes she forgets.... she said that but i don’t remember when.
Disney Gamer Hey! How’s it going? Yes, I remember her saying that as well.. but I haven’t seen her with it for a very long time... just worried about her...✌️
Medical marijuana can cause dry mouth. It’s a side effect for some people but I think there’s remedies for that.
I take a medication called Salagen (Pilocarpine) 4 times a day that is specifically made for dry mouth.
Hope today is a better day :)
Me again. After watching your video, I had some thoughts. There are days when I wake up feeling ill and it goes downhill. Other days if I just rest, it gets better. I have that same issue you describe with thirst. When I feel this way I've found if I drink Gatorade instead of water it seems to help. I also use IV fluids and IV meds for nausea (zofran, then phenergan if it's really bad). I don't have a GI diagnosis other than MCAS, but it affects my GI system and skin (flushing) the worst. And brain fog and memory issues. Glad Harlow brought you your phone; good girl!
The Peacock is Donny Osmond; Marie gave it away accidentally on a talk show and tried to cover up, but all the clues fit perfectly. And he is an AWESOME singer. I've even seen him live which was a thrill!
I hope you feel better soon!!
Hope how you feeling is not anything serious, get well soon x
Sorry your not feeling well hope you feel better soon your hair looks amazing love you Jacquie
Vertigo is the worst. I had one attack that sent me to the er. I too couldn’t get off the bathroom floor and just lay there puking. My husband had to carry me out to the car. There is a specialist in Celebration, over by Disney. He has equipment that can tell if what you have is bppv (stones in the wrong ear canal) and if is, put them back. Not sure how your pots would handle it. They spin you around and hang you upside down while glasses connected to the computer watches your eye movements.
get well soon! btw you are so brave i cry when i get my blood drawn with a butterfly needle
Vertigo is so awful! I got it the first time they got me up when I was in the hospital, actually when I moved back to bed. Fortunately as soon as I closed my eyes for a minute it went away.
I think the rabbit is either JC or Joey Fatone. Bee I think is Tina Turner. Don't have a clue who the monster is. Lion is maybe Rumor Willis? Could also be Drew Barrymore? Not sure. LOL I love that show. I like figuring stuff out, I used to be a code breaker in the Army, so this show is right up my alley.
I'm glad to see that you felt better at the end of the video.
11:04 I don't know if the same happens where you are, but when our water comes back from being shut off...the first time we open the tap it can sputter.
Please let us know what you doctor says. Feel better Jaquie.
I agree with you about the peacock! That’s who I think it is too! My other favorite is the monster! :) I love that show! I hope your appointment goes well 💛
Nothing worse than vertigo! I get it for months at a time...inner ear problems with pupils going back and forth, nausea, falling down...ooh, I sympathize with you! I hope you never have it again. Harlow is amazing.
Hope you feel better soon. I know how you feel. I had to have home health come in to change my wound dressings. When you've seen your own intestines. It's hard on you. Let me tell you the wound vac was horrible. You get better and give Harpo a kiss for me.
OMG! Vertigo is horrible! The first time it happened to me I didn't know what the heck was going on! I called the paramedics!
Hope ur feeling better soon!😘
Sorry u r feeling crummy, I had 2 vertigo attacks, very scary. 2nd one I couldn't get up to unlock door for parameds, fire & rescue had to break door down to enter. No inner ear problem, all other tests were normal, no clear reason for vertigo apparently. Such is life for some of us, I have advanced RA and degenerative disc. I keep going because you keep going. Your story is an inspiration for many of us! From frosty Minnesota.
I know you have Harlow, but girl you should really have a life alert on. Just in case. I am glad you are feeling a little better.
I thought she got a system for that purpose and was planning on teaching Harlow to push the button. Perhaps she didn't feel it was a life threatening emergency and didn't want to use it?
The peacock is Donny Osmond (you probably don't know who that is....way before your time lol) 😊
Shirley Jones Really?! There’s always one spoil sport😡
all his clues are him. even the wig he showed is from one of the plays/shows he was in.
I agree. The peacock is totally Donny Osmond.
Shirley Jones I am 33 know who he is. I 100% agree it’s him. All the clues it’s him.
I was going with Donny too, NPH has a distinctive voice that (to me at least) sounds a little higher pitched and "reedy" (for want of a better word) than the peacock. I definitely remember him I'd be thrilled if it turns out to be him. And now I have Soldier of Love stuck in my head; I have some of his older songs but that's the one I hear the most because it's on my jogging playlist! I would love if the peacock sang that for his finale but if we're right about Donny it would be a dead giveaway.
Vertigo may indicate an inner ear problem. Is there any chance you have an ear or sinus infection? I’m sorry you had such a rotten day.
So sorry you are not feeling well. Hopefully the dr can help.
Hugs!!!
Ohhh yeah the feeling of the tube change, it’s sooooooo weird
Love you J..❤❤
Good job Harlow for getting the 📱 phone! Feel better soon
I think Peacock is Donnie Osmond!
I really hope u feel better. I'm sorry this happened. And one question. So if this happens, Is Harlow a mobility dog so you can brace on her? I have asthma so when I start coughing I can throw up. So Lilac stands in front and I can use her to brace. I don't know its all different for us. I'm just wondering. Hope you feel better. ❤️
I love the peacock, but I'm also loving the bee who I think is Patti Labelle. Anyone else's guess?
I started getting vertigo after I got bitten by a black widow spider. Then later I got it again with certain medications or if I layed down too long. I also had tinnitus so some of it may have been related to TMJ and tooth grinding. None of this may relate to you but you never know. I was also wondering if the cats may have affected you somehow. I guess it's also possible you just caught a bug or maybe just your chronic illness symptoms going off. On another note, I can't believe how many spoilers are in the comments. I hope you are feeling better!
Yeah i have Meniere's disease vertigo with every allergy issue, etc. Premitt vertigo. I stay in bed those day's. I feel ya.
Sounds like a stomach bug. Those have been sweeping the nation
the Peacock is Donny Osmond
I have also been thirsty more than normal.
The masked singer is SO good!!!!!! The peacock is amazing, but my favorite is Monster! hes so cute but hes AWESOME
Hope you feel better my guy
As a person on a feeding tube who struggles to maintain weight, I was wondering what your thoughts are on people who have very different nutritional issues - such as people who struggle with obesity or people with anorexia?
Feel better
I love The Masked Singer. I believe the Peacock is Donny Osmond. Glad you are doing better.
I think the Peacock is Donny Osmond but I'm behind an episode, or two, so not sure if I've missed any new clues.
I got vertigo on Monday, was thinking I took the wrong meds but not sure.
I think the peacock is David hassleoff but I only saw the 1st performance. Some of my friends think it's Donny Osmond. I hadn't heard NPH, but I love him too! 😊
Love Harlow,, she is so smart. And loving
I’ve been nauseous the past 3 days too
I'm glad your doing better. Sounds really rough. Glad your okay though.💙 Yes I just started watching my favorite are the peacock and the monster. That's a good guess going to have to go back and listen. Are you still watching Manifest?
Tapering off opioid pain medication really does make you feel awful. Even if you do it slowly, there's days that you will feel very rough. You'll feel better in time. 😉
Nothing is set in stone yet but I'll probably get a J-tube and a G-tube soon. I currently have a trail NJ after having had an NG for 6,5 months.
At first I thought it was Donnie Osmond, but now I might have to agree with NPH.
You are SO BLESSED to HAVE HARLOW 💗🙏🏼💗🙏🏼. Most of us dealing with Chronic Nausea do NOT have that gift of a canine who not only works for you but clearly adores you🥰🥰🥰🥰. When I have a nasty nausea episode, I have to run myself to the bathroom.
Yep you’re BLESSED.
Maybe diabetes insipidus? I have that, it sucks.
Jaquie.... I LOVE The Masked Singer....I think The Peacock is either NPH or
Donny Osmond.
I am not feeling good either.😷 I have vomited already.😧Positive vibes✌ with gentle hugs🌷😘 #DaveSandersStepDaughter
I just got a new j tube after not having one since 2017 but then in March r April of 2018 in was getting bad and I could not eat right around October it got the the point were I could not even take my meds I went to one hospital and the sent me to another hospital were they put I duffhopp tube in my nose and sent me to a health rehab then I was there tell I get my j tube new years eve was in the hospital a week when he said I would b there 2 r 3 days went back to rehab and finally came home last Monday but when I need to get mine replaced he wants me to go to IR cause I don't have a lot of my stomach and my gi system is really missed up from the top to the bottom
We had to change my daughter's tube twice last week. She's almost 5 and it just keeps coming out with activity
Hey! I have been catching up on the last couple of videos, and I was just wondering if you have ever tried cannabis infused balms or bath salts? I have heard that it can really help with localized pain. But I know you are looking for a deeper kind of relief. But again, it is just something to think about. Hope you are doing well, and that you have more good days.
I so sorry
I love masked singer. I thought the peacock was a whalerg or new kids member at first.
Ken and robin are my favorite judges i didn't guess riki lake or tori spelling and i loved them in 90s so I could be wrong on the peacock too.
I've had virtigo, it's terrible! !!
Love your 😎 ... can you share what brand? Thanks
Loving your glasses :)
Hello my daughters has a GJ can you tell me the name of your covering as it’s been 2 weeks in now
I love that show
Have you ever heard of a neuro gastric pacemaker? I have very severe gastroparisis 98% falue of the stomach to empty. It's made by Medtronics. Mine was placed by Cedar Siani Beverly Hills Calif. I was a ton patient it had helped but is not a cure.
I’ve been on the fence with the peacock - NPH or Donny Osmond. The comments here are swaying me to Donny. I really want it to be NPH!!! Hope you feel better soon!
The peacock is Donny Osmond
Do you think it could have been a POTS flare up ? Glad you are feeling better!!
It sounds like you're having withdrawals from the opiates to me. You should feel better soon.
What a good girl Harlow
Is it possible that you just had a run of the mill stomach virus? I'm so sorry you had such a miserable day. I hope you feel better soon.
Peacock is Donny Osmond, think the rabbit is Justin Timberlake.
No, I think the rabbit is Joey Fatone.