I just started following both your channels, & I LOVE them! What a great era where you can work from at home if you’re not capable to work a traditional job. I DESPISE channels that are all ads, but with you, I know it helps have an income... which I LOVE!
Agreed! My 9-year old daughter is a T1D and we love our G6! I do one finger stick every morning to make sure it’s accurate, but aside from that, we make all treatment decisions based on Dex. I love that her precious little fingers are healing
Same here! The dexcom changed my life, so much better than the Libre! Love that it can also read to smart devices and can also be tracked by your doctors and family/friends if you choose to, and is so important if you live alone :)
Hey Amy, can you give us a link to the patches please? I would love to try them out and please keep us updated on if the help you at all (I hope they do!) I know you will anyways, thank you! ❤
Hey Amy, have you considered contacting the company that makes the dexcom and explaining your situation and ask if they can give you a discount? I had to do that with one of my meds that wasn't covered and was fairly expensive. They offered to completely cover my meds for as long as I take them. Just a thought
My daughter is diabetic and wears a dexcom; we absolutely love it! My blood sugar drops quite low too. I made an appointment to see the endocrinologist but had to cancel because I had to work, so I have to reschedule it. Tom is so cute with his two pills 😂 Fellow EDS, GP, etc sufferer here, and the amount of meds I take is ridiculous! I can’t wait to hear how those patches work. I live in the US, but I’ve never heard of them.
Goodness, Amy, considering all you endure, you are a lovely rose, blooming for us to see. You certainly make me feel bad for complaining about my much less serious chronic conditions. Keep being strong and do the very best you can. You’re a wonderful example.
I am hoping these patches work for you and are able to bring your levels up since this will be easier to use/absorb. Also, I love your nails. Basic, but super cute.
So exciting that you might get the dexcom G6! I was on the Libre like you are now, but once I switched to the dexcom life got so much easier! It reads my bloodsugar to my phone and Apple Watch, sends me alarms and alerts, and it even sends my BG to my family and friends! Would definitely recommend especially if your sugars are low let’s say you’re napping and not waking up from the alarm, that way Tom/a friend/a parent can call you until you wake up and get some sugar :) plus no calibrations and it lasts 10 days at time. It’s also super accurate! I love it and hope it works out for you!
I forgot to mention my insurance would not cover the dexcom, my doctor wrote several prior authorizations saying I need it and it kept getting denied but my doctor and I didn’t stop fighting and finally got it! Don’t give up until they give it to you!!
I think the 3-week continuous monitoring is the doctor's way of "proving" diabetes without a diagnosis of diabetes. I think he's going to try to get the funded Dexcom for you.
You dont have to monitor someone forn3 seeks to see if they are diabetic. It takes a few minutes and a simple blood test. Her sugar drops since she cant digest anything. Two different diseases
@@cadlecr6 I realize a simple blood test will diagnose diabetes. I'm talking about establishing a "diabetes-like" pattern since Amy is not diabetic. To create medical necessity.
Cheryl Blake - but it’s not a diabetes type pattern....diabetes is more blood sugar. It stands to reason that her blood sugar would be low if she is not eating all day or draining all that she is eating and only runs TPN at night.....
Actually they are correct. Most with hypoglycemia don't even realize it is happening but there is a phenomena that happens usually I'm the night, which is why it normally gets missed, when your sugars will drop into dangerous territory and your body responds by overproduction and sudden dumping of glucose and it will actually give a high reading on your monitor. Mine did this for a bit i'de wake in the middle of the night, soaked in sweat and I checked my sugar the second night just curious and my monitor began doing its warning thing and it said my sugars were in the 180's and were high. First time EVER i'de gotten anything over 112 (my highest I've ever seen before that) usually it's 50-60's with a rare 80 or 90 something in there. Anyways, if he can catch just a few of those random highs then he can say it's a diabetic like syndrome. She would not be given a DX of diabetes just show a diabetic "pattern " which is why he's dragging it out 3 weeks hoping to catch the few little high sugars. When he sends his next request form to the insurance though the entire 3 weeks wouldn't be included I can almost guarantee that, he will only include the days with highs and lows to show the "pattern" to hopefully get them to cover the monitor.
Kewl Amy, I really hope the patches work for you! My husband is trying to get the dexcom..however it’s spelled. Anyway, wow..it’s not easy to get approval for. He’s diabetic with up and down levels all the time. :(
Heya Amy I have problems digesting foods and have low calcuim vitamin D levels I also have severe Osteoporosis and having issues with digesting foods etc put a damper on my weight which is 36.2kg I go from able to gain weight than I loose it again if I get a very bad stomach flare up of thrush as it completely attacks my throat gullet and stomach and its so sore to even swallow foods! I have ensure supplement drinks my dietican has put me on an also I have a porta caff in my chest which hasn't been used for 5 years as I moved from the South up to the North 5years ago I was having TPN everyweek to keep my levels up which helped greatly! As I said my vitamin D calcuim and potassuim levels are all so low all. The time plus now the endocrinology dr is saying I have high bicarbonate in my blood and urine she has tested me for metabolic Disease which one part has proved positive she is just waiting for 2 spot urine tests to find out for sure if I have a metabolic Disease🤔 Can you give me any advice in what to do this has been on going for 5 years I was getting treatment when I lived in the south now being in the North Lancashire blackpool its taken a very big relapse in my treatment I know I have detriorated in my body as recently had a bone scan and I'm so scared of the results as I know there worser😥 Love Tee spencer❤️
GERD is HORRIBLE. I’ve had it for 7 years. Was on nexium once a day until my gastroparesis diagnosis in 2017 when it was upped to 2x a day because it got worse from the GP.
Libre is much more affordable than Dexcom. Dexcom can be put in more places than the Libre. But I have insurance and it doesn’t even cover Dexcom at all which is ridiculous. It is outrageously expensive, there are several parts to it you have to buy. With the Libre it’s much more simple, does the same, and you’re tracking is on your phone in their app. Unless your doctor wants you to specifically have the Dexcom, I would stick with the Libre👍🏻
Do you have allergic reactions to the patches too? I sometimes get a rash and I know that my grandmother wasn't able to use patches... And if you do get some, do you have any tips? I wish you a wonderful day! ♡
Sophee Art - i get brutal Gross rashes from them....blisters that ooze disgusting smelly shit a all the time. It’s so disgusting. My doc prescribed a steroid asthma inhaler to spray on the patch site right before applying the patch and it has helped quite a bit!!
Running Girl Runs I too have that issue and use a flixotide spray/inhale on the skin as well a barrier spray/wipe called skin prep. I’m allergic to all surgical dressings other than silicone based dressings.
I love your videos. Did you know that animals can get EDS also. I just seen a video on fb of a cat that has it. He was so cute. You probably know but I was shocked to hear what he had.
I have Iron deficiency anaemia. From all the info I can find, the transdermal iron patches likely don't work because iron can't be absorbed through the skin like that. I tried them a while back and didn't find any benefit so tried to find anything that indicated they actually worked and couldn't. Often those patches have got a little disclaimer on them. There's supposed to be a patch in development that does work but it works differently.
I've been trying to get my iron, vitamin B12 and D3 up with tablets but they don't seem to help that effectively. I personally think it has to do with malabsorption, which hasn't been officially diagnosed yet, so I am definitely gonna discuss this with my GP and see what she thinks about those patches.
Why not get a regular Glucose monitor? They're not that expensive and perhaps the insurance you have would pay for it : This is a link to purchasing glucose monitors in Australia: www.finder.com.au/blood-glucose-meters Most companies that you contact for the device you WANT but really don't need want a doctors diagnosis FROM your doctor to provide such medical equipment. What you need can be accomplished with a glucose monitor for under $20 (Australia) and the strips aren't that expensive either. Check Amazon as I know they send things to Australia.
I did the Iron plus Vit C for a couple of months, I had gastric surgery and now have some malabsorption issues with it. I didn’t do the B-12 because I give myself injection once a month.
when you're thinking "oh your english is really not that bad"... then watching amy's videos and just understanding the half of it... ok, thanks for nothing ^^
Heads up to all!! I ordered the Iron Plus patches from the website in Las Vegas that Amy used. $52 Australian later and lm getting 5 x1 patch and lm unsure if its even a one month supply!! Definitely not going to be ordering them ongoing, the company adds alot of disclaimers about the therapeutic benefits and them NOT being approved by FDA/TGA. Im interested to see if Amy gets any benefit from them and would definitely let you know if the Iron ones worked for my 16yr old! Im skeptical but interested.
I am a diabetic and have the Libra freestyle and it is really anoing plus I have to prick my finger and my Fingers go all crusty when I do it too much on one finger it is really anoing
Hi Amy wondered if you ever tried Pyloric Botox for GP? I have an NJ tube and there’s mention of Botox as treatment but I have hEDS and apparently someone told me it’s contraindicated for EDS? Also talking about a JEJ or a PEG-J as permanent solutions I’m in UK. Those meds patches look awesome are they prescribed or can you buy them? Love to you & Tom 💕💕xx
I wish that I could get Dexicom. I'm diabetic and have to check my blood levels at least 4 times a day. It would save me a lot of pain and fingertips (in and artist and need my fingers)but, my insurance doesn't pay for it.
I hate that those of us with hypoglycemia are supposed to test all the time yet they won't convert the testing stuff because we aren't diabetic. It is just as dangerous as being diabetic and it's so frustrating that we need the same equipment to test but we have to pay for it full price just because we aren't diabetic oof.
I agree it's super frustrating as I have been seeing an endo for my asymptomatic hypoglycemia and my last appointment I was told it was all in my head and so I have pushed for a second opinion and in that time I have almost passed out twice as I have no idea if I'm low and I do require the dexcom as I need alerts and I can not afford to pay
@@Cahila3617 oof sorry you have to deal with all of that and the long wait for DX. I have always had super low sugars and passed out constantly for awhile before they finally said ok yea you have hypoglycemia.
@@kirstenornelas881 yeah at the moment as I've been fighting this for over 4 years now, I feel the only way they will listen to me is if I end up in hospital after passing out I have asked them for help and I'm not getting it yet and having to fight for my own health
@@Cahila3617 I know how that feels. I've been sick since I can remember, 5 years old I remember getting rolled up in a ball on the couch under blankets just crying and shaking because my stomach hurt so fing bad. I have been DXd with first ibs then it went to Crohn's now they have said unspecified colitis and I am 35 about to be 36 next month. Honestly I caused my own hypoglycemia, obviously not on purpose at all but because my guts hurt so badly when I eat, my skin breaks out in hives or blisters with certain foods and I get spasms in my guts and I'm nauseated or vomit constantly sometimes I have blood in my urine or well you know anyhow yea I know how hard it is to always be sick and I have deff had my days when I'm just like please let this end I can't take anymore but you just gotta keep fighting, eventually you and me and others will finally get answers and as medicine continues to progress all of us will one day get better relief or at the very least be the ones who help find things that work. Chin up and help on going. Today is one of those days for me so I totally get it. I threw up at like 3 a.m. and just been nauseated all day, ate once today and instantly regretted it and constantly fight with being so fing hungry but not wanting to be sick and be in so much pain and so bloated I seriously get the "how far along are you" much more often than I like to admit and it destroys me every time. Mostly, though, it just freaking hurts! I also have pain issues they "can't quite figure out" I have constant adema in my legs, feet and sometimes in my hands, my arms, legs, hands and feet go numb if I'm in any position for more than a min or two not exaggerating either I can't sit or stand or lay down without something going to sleep, as I type this my entire right leg is asleep but my hip is on fire and out of the socket again but I can't get it can in myself and the hubby is at work right now. Oof. Also get swollen joints to the point everyone can tell my knees are swollen, or whichever else is swollen that moment in time and generally it's my elbows, knees, hands and feet and my lower back and my neck that literally swell and you can push into the inflammation. The only problem is when they take my blood I don't put off the RH factories but they tell me everything else points to it being rheumatoid arthritis so that's the DX I was given "for now". I'm not on meds atm because I seriously got tired of being a dam test rabbit essentially and not getting tests here if you have shiiit insurance, which I do, they would rather just give you a half ass DX and throw meds at you instead of actually doing the tests needed to figure out wtf is going on. Keep pushing! I'm getting a new doctor soon and hoping somebody will finally start actually figuring shit out, lost my last doc because I stopped all my medications, I was on 12 and felt so horrid, and refused a new one unless tests were done, instead my doc decided he couldn't help me and he was done. Lol gotta love life eh? Lol I have to laugh cuz otherwise I'll cry and that's the truth I've had to find the humor in my illness because for awhile I let it get me so depressed I lost my self in depression and anxiety and just disappeared into my own little world and that's so unhealthy. Anyhow I'm just going on and on now so I'll stop by take care and don't ever give up!
Hey! I've just been diagnosed with fibromyalgia Any tips on helping what helps the pain? I've literally just been diagnosed so I have no idea what I'm doing
Don't over do it rest when your body says stop or before.keep vitamin up and try not to get deconditoned put yourself first were u can and find a med that helps your doc will no what your ok with hope feel better soon I no it hard I have me/cfs pots mcas generally allsorts hahaxx
If the medicine don't work well and still feeling pain, you can make tea and take a warm bath, even put some patch or cream just to reliebe the pain and take a nap works too, i don't have that, but my husband does.
I find tramadol and gabapentin help augmented with co codamol and hot bath if I can get in I find showers hurt my skin check out app called the mighty enter fibromyalgia in search box excellent articles all done by sufferers
I don’t have fibro but years ago, before I was diagnosed with psoriatic arthritis and EDS, I was misdiagnosed with fibro, as they all cause widespread pain. The main thing I find helpful is to stay active. Many days moving hurts, but not moving leads to deconditioning and muscle waste and will make things worse. Be careful about too many NSAIDs as it can destroy your stomach. Make sure you’re getting enough sleep...when I don’t sleep well, I definitely feel it more. Heat and ice are your friends. And pace yourself...learn your limits and try not to overdo it, just for the sake of getting things done
Thank you all really it does mean a lot I don't know anyone else my age that suffers with it so finding someone to talk to about it is difficult My rheumatology Dr put me on Dosulepin for the moment As I'm on sertraline too and that doesn't mix well with a lot of meds 😅 But I've been using my heat pack when the pain gets intense and sleeping when I can I've heard it's hard to manage pain meds as you get used to the dose so I wanna avoid it if ican for as long as I can 😅 I've also damaged the ligaments in my ankle so I'm waiting on an operation for that so walking can get a bit painful but I'm hoping to get back to some light stuff in the gym once that's sorted 😊 But all your information really has helped me actually thank you all so much 🥰
I just order the immune patches and the Anti-viral patches. I hope they work. Ive been in hospital 6 times in the past 3 months for viral infections and all kinds of other stuff. WISH ME LUCK PLZZZZ. I am beyond tired of getting sick all the time.
Did you guys know this. I just learn this off a documentary. They is no such thing as almond milk. You can’t get milk from a nut or beans. What makes milk milk lactose ? And you can’t get lactose from almonds or beans. They said that it’s almond and water blend together. I thought that was very interesting 🤔
@@watchthisheadspace yeah they basically soak the nuts in water and then blend it to make it really creamy. You can even make it really easily at home. I honestly prefer almond milk over cow's milk since my stomach can be temperamental sometimes.
Knuffelbeer. Just having a conversation with viewers. If you’re unhappy with your life get help. Don’t bring your rude comments here. Be positive. NO NEED TO BE RUDE.
Karen White: Im definitely up for a trial. The sleep ones may be different price, l didnt look at them. Im really keen to hear what works/ didn't work with Amy's haul as shes trying a few different ones. Im skeptical but keen to try. Maybe see what Amy says after a month then try them.
Karen White if you have Gastroparesis be careful on Eliquis! I about died from blood loss from my period because my GP caused me to get too much in my system at one time. I bled for literally 17 days heavily to the point I was soaking through 4-6 pull ups a DAY
She’s addressed this in another video, she’s not engaged it’s just that in the mornings she is so swollen from TPN she just puts her rings on whatever fingers they fit on.
Nox and Boomer: Thankyou for the link..... l clicked on it and ordered the Iron Plus patches Amy has for my 16yr old that can't tolerate Iron tablets. $52 Australian later, there not FDA or TGA approved and to be honest it says 5 x 1 patch so lm not even certain if its a one month supply or not. Honestly if they work fantastic, but the company has ALOT of disclaimers about the therapeutic benefits and l am very very skeptical that they work. Giving it a go to trial as Amy said, definitely not paying $52 a month ongoing! This could be "buyer beware". Im interested to see if they work for Amy!
Brilliant But Blue - I’m intrigued about how the heck her skin can tolerate all these patches with mast cell disease! I don’t have mast cell at all- but my skin can not tolerate patches or adhesives of any type.
@@brilliantbutblue I have the same problem with Iron tablets and even the infusion doesn't work. I saw this,too, that they are not approved. Then there are the shipping costs, for me $14.99. I don't know but I hope these will do its job for Amy
Nox and Boomer: My shipping cost was exactly the same as you said, then it added taxes (lm in Australia) and that exceeded the actual patch costs. Im keen to see if they work on my Daughter and Amy also. Will keep you updated and hopefully Amy does also.☺
I have dexcom for diabetes control and it has literally SAVED MY LIFE
You are so positive even when you're going through issues, I'm glad I found this channel.
I just started following both your channels, & I LOVE them! What a great era where you can work from at home if you’re not capable to work a traditional job. I DESPISE channels that are all ads, but with you, I know it helps have an income... which I LOVE!
I can't even begin to imagine what it must be like for you but you are definitely one tough woman - xoxoxo
Love you so much !I support you and I appreciate you so much for how you can deal phisically and mentally with your chronic diseases.
I am actually a Type 1 diabetic, and I use a dexcom for my blood sugar. I really do love it a lot and I’d recommend you get it if your up for debate
I have to agree! My son has been using dexcom for about 5 months and it's been fantastic. Life changing!
Agreed! My 9-year old daughter is a T1D and we love our G6! I do one finger stick every morning to make sure it’s accurate, but aside from that, we make all treatment decisions based on Dex. I love that her precious little fingers are healing
Same here! The dexcom changed my life, so much better than the Libre! Love that it can also read to smart devices and can also be tracked by your doctors and family/friends if you choose to, and is so important if you live alone :)
Hey Amy, can you give us a link to the patches please? I would love to try them out and please keep us updated on if the help you at all (I hope they do!) I know you will anyways, thank you! ❤
Hey Amy, have you considered contacting the company that makes the dexcom and explaining your situation and ask if they can give you a discount? I had to do that with one of my meds that wasn't covered and was fairly expensive. They offered to completely cover my meds for as long as I take them. Just a thought
speakstooswift87 that's a really good idea! Maybe she could be some sort of brand ambassador too, since she has a RUclips channel.
They don't help out for type 1 diabetics. :(
Wow ur almost at 100k honestly so proud ive been watching for ages and to see ur vids get better and better is really great to see 😊
Has anyone ever thought of High school musical when Amy goes to the wild cats games 😊😊😊😊
Emma Craig yes 😂 even my daughter said it makes me think of high school musical 😀
My daughter is diabetic and wears a dexcom; we absolutely love it! My blood sugar drops quite low too. I made an appointment to see the endocrinologist but had to cancel because I had to work, so I have to reschedule it.
Tom is so cute with his two pills 😂 Fellow EDS, GP, etc sufferer here, and the amount of meds I take is ridiculous!
I can’t wait to hear how those patches work. I live in the US, but I’ve never heard of them.
So glad to see you up and looking healthier. Keep fingers crossed that your patches work let me know I’m interested in them 🌹💋
Goodness, Amy, considering all you endure, you are a lovely rose, blooming for us to see. You certainly make me feel bad for complaining about my much less serious chronic conditions. Keep being strong and do the very best you can. You’re a wonderful example.
I am hoping these patches work for you and are able to bring your levels up since this will be easier to use/absorb. Also, I love your nails. Basic, but super cute.
So exciting that you might get the dexcom G6! I was on the Libre like you are now, but once I switched to the dexcom life got so much easier! It reads my bloodsugar to my phone and Apple Watch, sends me alarms and alerts, and it even sends my BG to my family and friends! Would definitely recommend especially if your sugars are low let’s say you’re napping and not waking up from the alarm, that way Tom/a friend/a parent can call you until you wake up and get some sugar :) plus no calibrations and it lasts 10 days at time. It’s also super accurate! I love it and hope it works out for you!
I forgot to mention my insurance would not cover the dexcom, my doctor wrote several prior authorizations saying I need it and it kept getting denied but my doctor and I didn’t stop fighting and finally got it! Don’t give up until they give it to you!!
I think the 3-week continuous monitoring is the doctor's way of "proving" diabetes without a diagnosis of diabetes. I think he's going to try to get the funded Dexcom for you.
You dont have to monitor someone forn3 seeks to see if they are diabetic. It takes a few minutes and a simple blood test. Her sugar drops since she cant digest anything. Two different diseases
cadlepartyof 7: Her HbA1c would give the Dr the information he needs!! You are correct.
@@cadlecr6 I realize a simple blood test will diagnose diabetes. I'm talking about establishing a "diabetes-like" pattern since Amy is not diabetic. To create medical necessity.
Cheryl Blake - but it’s not a diabetes type pattern....diabetes is more blood sugar. It stands to reason that her blood sugar would be low if she is not eating all day or draining all that she is eating and only runs TPN at night.....
Actually they are correct. Most with hypoglycemia don't even realize it is happening but there is a phenomena that happens usually I'm the night, which is why it normally gets missed, when your sugars will drop into dangerous territory and your body responds by overproduction and sudden dumping of glucose and it will actually give a high reading on your monitor. Mine did this for a bit i'de wake in the middle of the night, soaked in sweat and I checked my sugar the second night just curious and my monitor began doing its warning thing and it said my sugars were in the 180's and were high. First time EVER i'de gotten anything over 112 (my highest I've ever seen before that) usually it's 50-60's with a rare 80 or 90 something in there. Anyways, if he can catch just a few of those random highs then he can say it's a diabetic like syndrome. She would not be given a DX of diabetes just show a diabetic "pattern " which is why he's dragging it out 3 weeks hoping to catch the few little high sugars. When he sends his next request form to the insurance though the entire 3 weeks wouldn't be included I can almost guarantee that, he will only include the days with highs and lows to show the "pattern" to hopefully get them to cover the monitor.
Glad you got to the game. Thought the patches would be bigger since the size of the packet is huge xx
Love your strength and positivity 💞
Kewl Amy, I really hope the patches work for you!
My husband is trying to get the dexcom..however it’s spelled. Anyway, wow..it’s not easy to get approval for. He’s diabetic with up and down levels all the time. :(
Does he feel his lows? If not, make sure his doctor communicates that to the insurance company.
I love u girl!!!! Ur so strong and amazing!!!!🥰😍😘
Your strength is amazing. I’m only diabetic and just can’t handle it ....
You are looking fantastic, Amy ❤️💜
can you please do another video on drainable food ideas? x
Hahahaha i love funny videos like this! XD
Great that those patches exist to make life easier to live it!!
Heya Amy I have problems digesting foods and have low calcuim vitamin D levels I also have severe Osteoporosis and having issues with digesting foods etc put a damper on my weight which is 36.2kg I go from able to gain weight than I loose it again if I get a very bad stomach flare up of thrush as it completely attacks my throat gullet and stomach and its so sore to even swallow foods! I have ensure supplement drinks my dietican has put me on an also I have a porta caff in my chest which hasn't been used for 5 years as I moved from the South up to the North 5years ago I was having TPN everyweek to keep my levels up which helped greatly! As I said my vitamin D calcuim and potassuim levels are all so low all. The time plus now the endocrinology dr is saying I have high bicarbonate in my blood and urine she has tested me for metabolic Disease which one part has proved positive she is just waiting for 2 spot urine tests to find out for sure if I have a metabolic Disease🤔
Can you give me any advice in what to do this has been on going for 5 years I was getting treatment when I lived in the south now being in the North Lancashire blackpool its taken a very big relapse in my treatment I know I have detriorated in my body as recently had a bone scan and I'm so scared of the results as I know there worser😥
Love Tee spencer❤️
Tee Spencer good luck best wishes xx
@@gracehanmore5755 thankyou x
You're such an inspiration xx
Much love from Germany ❤️❤️
GERD is HORRIBLE. I’ve had it for 7 years. Was on nexium once a day until my gastroparesis diagnosis in 2017 when it was upped to 2x a day because it got worse from the GP.
I've just gotten so excited for you, is that an engagement ring?!
No she has explained in the past that the ring doesn't fit certain times of the day.
@@RH117 Ah, thank you! I wasn't too sure, but thank you for clarifying for me.
Hey girl great to see you 😄
Hey, I relate so much. I have mastocytosis and gastroperisis.
Wouldn’t the patches interfere with the amount of vitamins they put in your TPN?
Libre is much more affordable than Dexcom. Dexcom can be put in more places than the Libre. But I have insurance and it doesn’t even cover Dexcom at all which is ridiculous. It is outrageously expensive, there are several parts to it you have to buy. With the Libre it’s much more simple, does the same, and you’re tracking is on your phone in their app. Unless your doctor wants you to specifically have the Dexcom, I would stick with the Libre👍🏻
Hay fever is so bad in Perth this year
Make sure your vitamin B12 stays up. I think a B12 deficiency contributed to me getting blood clots in my legs and lungs.
Do you have allergic reactions to the patches too? I sometimes get a rash and I know that my grandmother wasn't able to use patches...
And if you do get some, do you have any tips?
I wish you a wonderful day! ♡
Sophee Art - i get brutal Gross rashes from them....blisters that ooze disgusting smelly shit a all the time. It’s so disgusting. My doc prescribed a steroid asthma inhaler to spray on the patch site right before applying the patch and it has helped quite a bit!!
Running Girl Runs I too have that issue and use a flixotide spray/inhale on the skin as well a barrier spray/wipe called skin prep. I’m allergic to all surgical dressings other than silicone based dressings.
Thank you both for the tips!! 😊
I love your videos. Did you know that animals can get EDS also. I just seen a video on fb of a cat that has it. He was so cute. You probably know but I was shocked to hear what he had.
you should get a service dog i think it would help you out soooo much
Omg love ur stitch shirt :) where did you get it? And where did you order those patches ?
Chronicles Of A Lass: PatchMD. Take out a personal loan before ordering though!!!
I got my pjs from primark & the patches I got from here: www.patchmd.com
I have Iron deficiency anaemia. From all the info I can find, the transdermal iron patches likely don't work because iron can't be absorbed through the skin like that. I tried them a while back and didn't find any benefit so tried to find anything that indicated they actually worked and couldn't. Often those patches have got a little disclaimer on them. There's supposed to be a patch in development that does work but it works differently.
I've been trying to get my iron, vitamin B12 and D3 up with tablets but they don't seem to help that effectively. I personally think it has to do with malabsorption, which hasn't been officially diagnosed yet, so I am definitely gonna discuss this with my GP and see what she thinks about those patches.
Hey there. Just. Caught this video. Was wondering how the patches worked?
Cool vid, thanks for sharing.
Amy.. I love the sponge bob reference.. Good job
Why not get a regular Glucose monitor? They're not that expensive and perhaps the insurance you have would pay for it :
This is a link to purchasing glucose monitors in Australia:
www.finder.com.au/blood-glucose-meters
Most companies that you contact for the device you WANT but really don't need want a doctors diagnosis FROM your doctor to provide such medical equipment. What you need can be accomplished with a glucose monitor for under $20 (Australia) and the strips aren't that expensive either.
Check Amazon as I know they send things to Australia.
Are you still journaling. If so will you be doing any more videos?
PS love all your visions x
I did the Iron plus Vit C for a couple of months, I had gastric surgery and now have some malabsorption issues with it. I didn’t do the B-12 because I give myself injection once a month.
when you're thinking "oh your english is really not that bad"... then watching amy's videos and just understanding the half of it... ok, thanks for nothing ^^
Love you so much x
Can you translate the videos into Arabic, please, because I love you, but I do watch videos without understanding anything.💙🌸.
Heads up to all!! I ordered the Iron Plus patches from the website in Las Vegas that Amy used. $52 Australian later and lm getting 5 x1 patch and lm unsure if its even a one month supply!! Definitely not going to be ordering them ongoing, the company adds alot of disclaimers about the therapeutic benefits and them NOT being approved by FDA/TGA. Im interested to see if Amy gets any benefit from them and would definitely let you know if the Iron ones worked for my 16yr old! Im skeptical but interested.
The FDA doesn't give vitamins an approval rating in the states. Vitamins are not controlled like pain meds, allergy meds, etc.
Chronic Butterfly: Ok great, thanks for letting me know.☺
Did you go to the doctor appointment solo and just setup the camera on the other side of the room?
I LOVE YOU
Did the patches work?
I am a diabetic and have the Libra freestyle and it is really anoing plus I have to prick my finger and my Fingers go all crusty when I do it too much on one finger it is really anoing
Hi Amy wondered if you ever tried Pyloric Botox for GP? I have an NJ tube and there’s mention of Botox as treatment but I have hEDS and apparently someone told me it’s contraindicated for EDS? Also talking about a JEJ or a PEG-J as permanent solutions I’m in UK. Those meds patches look awesome are they prescribed or can you buy them? Love to you & Tom 💕💕xx
Where did you get those vitamin patches I would love to see if their avail in Canada and if they are covered by Ontario Disability
www.patchmd.com/
www.patchmd.com/
Spongebob!!!!! I love you Amy. Be well!
I wish that I could get Dexicom. I'm diabetic and have to check my blood levels at least 4 times a day. It would save me a lot of pain and fingertips (in and artist and need my fingers)but, my insurance doesn't pay for it.
Are you type 1?
Please go and check your PO Box next week or week after if you get the chance
💛💛💛
Do you get any help with your meds and/or supplies?
I hate that those of us with hypoglycemia are supposed to test all the time yet they won't convert the testing stuff because we aren't diabetic. It is just as dangerous as being diabetic and it's so frustrating that we need the same equipment to test but we have to pay for it full price just because we aren't diabetic oof.
I agree it's super frustrating as I have been seeing an endo for my asymptomatic hypoglycemia and my last appointment I was told it was all in my head and so I have pushed for a second opinion and in that time I have almost passed out twice as I have no idea if I'm low and I do require the dexcom as I need alerts and I can not afford to pay
@@Cahila3617 oof sorry you have to deal with all of that and the long wait for DX. I have always had super low sugars and passed out constantly for awhile before they finally said ok yea you have hypoglycemia.
@@kirstenornelas881 yeah at the moment as I've been fighting this for over 4 years now, I feel the only way they will listen to me is if I end up in hospital after passing out I have asked them for help and I'm not getting it yet and having to fight for my own health
@@Cahila3617 I know how that feels. I've been sick since I can remember, 5 years old I remember getting rolled up in a ball on the couch under blankets just crying and shaking because my stomach hurt so fing bad. I have been DXd with first ibs then it went to Crohn's now they have said unspecified colitis and I am 35 about to be 36 next month. Honestly I caused my own hypoglycemia, obviously not on purpose at all but because my guts hurt so badly when I eat, my skin breaks out in hives or blisters with certain foods and I get spasms in my guts and I'm nauseated or vomit constantly sometimes I have blood in my urine or well you know anyhow yea I know how hard it is to always be sick and I have deff had my days when I'm just like please let this end I can't take anymore but you just gotta keep fighting, eventually you and me and others will finally get answers and as medicine continues to progress all of us will one day get better relief or at the very least be the ones who help find things that work. Chin up and help on going. Today is one of those days for me so I totally get it. I threw up at like 3 a.m. and just been nauseated all day, ate once today and instantly regretted it and constantly fight with being so fing hungry but not wanting to be sick and be in so much pain and so bloated I seriously get the "how far along are you" much more often than I like to admit and it destroys me every time. Mostly, though, it just freaking hurts! I also have pain issues they "can't quite figure out" I have constant adema in my legs, feet and sometimes in my hands, my arms, legs, hands and feet go numb if I'm in any position for more than a min or two not exaggerating either I can't sit or stand or lay down without something going to sleep, as I type this my entire right leg is asleep but my hip is on fire and out of the socket again but I can't get it can in myself and the hubby is at work right now. Oof. Also get swollen joints to the point everyone can tell my knees are swollen, or whichever else is swollen that moment in time and generally it's my elbows, knees, hands and feet and my lower back and my neck that literally swell and you can push into the inflammation. The only problem is when they take my blood I don't put off the RH factories but they tell me everything else points to it being rheumatoid arthritis so that's the DX I was given "for now". I'm not on meds atm because I seriously got tired of being a dam test rabbit essentially and not getting tests here if you have shiiit insurance, which I do, they would rather just give you a half ass DX and throw meds at you instead of actually doing the tests needed to figure out wtf is going on. Keep pushing! I'm getting a new doctor soon and hoping somebody will finally start actually figuring shit out, lost my last doc because I stopped all my medications, I was on 12 and felt so horrid, and refused a new one unless tests were done, instead my doc decided he couldn't help me and he was done. Lol gotta love life eh? Lol I have to laugh cuz otherwise I'll cry and that's the truth I've had to find the humor in my illness because for awhile I let it get me so depressed I lost my self in depression and anxiety and just disappeared into my own little world and that's so unhealthy. Anyhow I'm just going on and on now so I'll stop by take care and don't ever give up!
My primary and secondary insurance covered my monitor and test strips when I was diagnosed with hypoglycemia.....
I take a vitamin B complex patch.
How they work for you ❤️🙏🏼
Hey! I've just been diagnosed with fibromyalgia
Any tips on helping what helps the pain?
I've literally just been diagnosed so I have no idea what I'm doing
Don't over do it rest when your body says stop or before.keep vitamin up and try not to get deconditoned put yourself first were u can and find a med that helps your doc will no what your ok with hope feel better soon I no it hard I have me/cfs pots mcas generally allsorts hahaxx
If the medicine don't work well and still feeling pain, you can make tea and take a warm bath, even put some patch or cream just to reliebe the pain and take a nap works too, i don't have that, but my husband does.
I find tramadol and gabapentin help augmented with co codamol and hot bath if I can get in I find showers hurt my skin check out app called the mighty enter fibromyalgia in search box excellent articles all done by sufferers
I don’t have fibro but years ago, before I was diagnosed with psoriatic arthritis and EDS, I was misdiagnosed with fibro, as they all cause widespread pain. The main thing I find helpful is to stay active. Many days moving hurts, but not moving leads to deconditioning and muscle waste and will make things worse. Be careful about too many NSAIDs as it can destroy your stomach. Make sure you’re getting enough sleep...when I don’t sleep well, I definitely feel it more. Heat and ice are your friends. And pace yourself...learn your limits and try not to overdo it, just for the sake of getting things done
Thank you all really it does mean a lot I don't know anyone else my age that suffers with it so finding someone to talk to about it is difficult
My rheumatology Dr put me on Dosulepin for the moment
As I'm on sertraline too and that doesn't mix well with a lot of meds 😅 But I've been using my heat pack when the pain gets intense and sleeping when I can I've heard it's hard to manage pain meds as you get used to the dose so I wanna avoid it if ican for as long as I can 😅
I've also damaged the ligaments in my ankle so I'm waiting on an operation for that so walking can get a bit painful but I'm hoping to get back to some light stuff in the gym once that's sorted 😊
But all your information really has helped me actually thank you all so much 🥰
Do you have season passes to these sports events?
Ps I hate sports
How’s nexaplanon????
I just order the immune patches and the Anti-viral patches. I hope they work. Ive been in hospital 6 times in the past 3 months for viral infections and all kinds of other stuff. WISH ME LUCK PLZZZZ. I am beyond tired of getting sick all the time.
I hope this goes well for you! Good luck!
JessTheHorse thank you so much!
I love patch type medications but I have trouble with adhesives I usto get adhd patchs And also the nausea patches
where do you get your patches from? I'm currently wanting to try a pain patch and/or nausea patch, but just can't seem to find a decent website
@@morganmckenzie517 my gi gives me transderm scop the motion sickness patches for nausea
How did Tom find out he had GERD? x
Tegan Wraith he went to the doctors and got tested for it xx
Did you guys know this. I just learn this off a documentary. They is no such thing as almond milk. You can’t get milk from a nut or beans. What makes milk milk lactose ? And you can’t get lactose from almonds or beans. They said that it’s almond and water blend together. I thought that was very interesting 🤔
No ‘milk’ as many commonly call it refers to animal milk. Nuts are made in to milk by soaking in water and processing
@@watchthisheadspace yeah they basically soak the nuts in water and then blend it to make it really creamy. You can even make it really easily at home. I honestly prefer almond milk over cow's milk since my stomach can be temperamental sometimes.
I only drink soy milk
westberry1 you needed a documentary to tell you that? Dear lord.
Knuffelbeer. Just having a conversation with viewers. If you’re unhappy with your life get help. Don’t bring your rude comments here. Be positive. NO NEED TO BE RUDE.
Are the patches reasonable?
Karen White: Absolutely not. $52 Australian for 5 Iron plus patches (the shipping and tax from Las Vegas is more than the product cost).
I don't need the iron (at least I hope not...on Eloquis) but I want to try the sleep one. I take 36mg of melatonin now
Karen White: Im definitely up for a trial. The sleep ones may be different price, l didnt look at them. Im really keen to hear what works/ didn't work with Amy's haul as shes trying a few different ones. Im skeptical but keen to try. Maybe see what Amy says after a month then try them.
Karen White if you have Gastroparesis be careful on Eliquis! I about died from blood loss from my period because my GP caused me to get too much in my system at one time. I bled for literally 17 days heavily to the point I was soaking through 4-6 pull ups a DAY
Hope you have a good day sweet girl
What is the link for those patches?!
www.patchmd.com
Now now not now now now not now now
Sorry, couldn't make it through the video with all the fidgeting and hair adjusting etc.
Not now now not now now not now now now not
Is that a ring I see?!?
Why does it matter
She’s addressed this in another video, she’s not engaged it’s just that in the mornings she is so swollen from TPN she just puts her rings on whatever fingers they fit on.
Can you tell me where to get the patches love you guy's ❣
www.patchmd.com I found it 🙂
Nox and Boomer: Thankyou for the link..... l clicked on it and ordered the Iron Plus patches Amy has for my 16yr old that can't tolerate Iron tablets. $52 Australian later, there not FDA or TGA approved and to be honest it says 5 x 1 patch so lm not even certain if its a one month supply or not. Honestly if they work fantastic, but the company has ALOT of disclaimers about the therapeutic benefits and l am very very skeptical that they work. Giving it a go to trial as Amy said, definitely not paying $52 a month ongoing! This could be "buyer beware".
Im interested to see if they work for Amy!
Brilliant But Blue - I’m intrigued about how the heck her skin can tolerate all these patches with mast cell disease! I don’t have mast cell at all- but my skin can not tolerate patches or adhesives of any type.
@@brilliantbutblue I have the same problem with Iron tablets and even the infusion doesn't work. I saw this,too, that they are not approved. Then there are the shipping costs, for me $14.99. I don't know but I hope these will do its job for Amy
Nox and Boomer: My shipping cost was exactly the same as you said, then it added taxes (lm in Australia) and that exceeded the actual patch costs. Im keen to see if they work on my Daughter and Amy also. Will keep you updated and hopefully Amy does also.☺
Hi allllll
#AmYsTrOnG 💖💛❤👊💪🏼
Hey x
Love you
🥰
Hey Amy lmao Tom
you should get a service dog i think it would help you out soooo much