That's been my biggest pet peeve with figuring out my chronic illnesses the past few years. I knew I had endometriosis and when I went to a GI doctor in 2018 and being told that I was too young to have these health issues was infuriating.
It makes me so sad how we all have such similar experiences with this. Being "too young" doesn't mean anything. These illnesses don't have an age cut off!
We deserve a Nobel Peace prize for dealing with some doctors lol.Chances are that it is dysautonomia and not a heart problem , considering that gastroparesis is actually a form of dysautonomia.I hope that managing that in combination with the new formula will make a difference for you ❤️❤️
Agreed. Generally the heart will check out fine. The vagus nerve can cause both the POTS and gastroparesis, which is why the vagus nerve stimulating medication Pyridostigmine is prescribed to treat both issues.
Don’t ever feel bad for standing up for your self! You are your best advocate! And don’t apologize for the content you put on your channel. Chronic illness mostly sucks, so venting and telling about your struggles just shows you’re real and not fake!! You inspire me with your upbeat personality! But you’re allowed to be down sometimes! Give yourself some grace! I also have GP and other chronic illnesses too! I understand where you’re coming from. You do what you need to do! You do you boo! Lol!
Thank you so much that truly means a lot to me! I have definitely had a lot of struggles lately and I am so happy that you all have created a safe space for me to share them and get support and reassurance from. It seriously means so so much to me. Thank you so so much and I hope you have a wonderful week!💚
Hi Kenna, I wanted to say that I really appreciate you sharing your frustration and other feelings about your doctor appointment. In an earlier video in the comments I shared that my daughter, who just turned 20 yesterday (!) has had acute and chronic G.I. issues her whole life (plus hematology, urology, neuro, and most recently some possible cardiology issues as well). She transitioned from her pediatric specialty care providers to adult specialty care providers pretty much just as the pandemic began, which has made it really hard for her to communicate with them about her pain and symptoms etc., because they don’t have a real understanding of her history, nor familiarity with her rare condition, or that we might just know more about her health and treatment than they do! One of her first interaction with the new adult G.I. was a very funny email in which he said “well I suppose we could try this plan or that plan or is there anything you’d like to try?” Which she and I both found hysterical because it wasn’t often in the pediatric world where specialists would give either of us an opinion on how things should really move forward! Anyway, I think you felt a little bad perhaps that you were sharing all of those frustrations and feelings, but I totally want to let you know how much I appreciate you doing just that. I completely understood (as much as a parent of a daughter in a similar situation CAN understand :o) all that you shared…and if it means anything to you, it makes perfect sense to me that this whole new unfamiliar area of cardiology, that you might have concerns with starting a treatment for which you don’t even have a diagnosis yet, as well as just your general concerns and fears. That’s a really hard part to negotiate, when you have a new specialist who maybe just doesn’t have the best bedside manner and is kind of an idiot and isn’t really listening to you, well unfortunately that’s very familiar to me but it certainly doesn’t make it right. All right, well now I’m babbling. I can’t wait to show my daughter this vlog in particular. I think she’ll really identify with your frustrations and get some thing out of it. Once again I admire you and your positive attitude and getting word out about Gastroparesis, and remaining productive with your crafts and home decorating. Great job and keep doing what makes you happy. 💜
Thank you so much that means a lot to me! I always get so nervous sharing negative things in fear it will be taken the wrong way. Going from pediatric to adult care is always such an intimidating thing, like you said because they don't know the history! I hope things start to work themselves out with your daughters care! Thank you so much for validating my feelings that seriously means a lot to me! And thank you so much for your kind words! Comments like these seriously make my day💚
I look forward to your videos. They are one of my highlights. My health keeps getting worse. I have cerebral palsy and many other conditions. I finally got to my doctor again and she told me she didn’t know why I can’t eat and now I have to wait a month to see a GI doctor’s assistant because there’s no GIs available. I’ve been forcing myself to eat and then getting the worst cramps in my upper abdomen. We are also worried about POTS or inner ear problems that can cause hearing loss. When I watch your videos It reminds me I’m not alone and things can be ok. I know you still have all your bad days and moments but you have this energy about you that’s so comforting. Thank you for sharing. It’s so great. I’m actually tearing up. Sorry if this is a mess or anything.
aww thank you so much that truly means a lot to me! I am so sorry to hear that your health is worsening. The waiting to see doctors while you suffer with your symptoms is so tough and so is the forcing yourself to eat. I really hope you are able to get more things figured out soon. Thank you again for your kind words because those are what keep me going through my bad days. You are so so kind thank you💚 Wishing you nothing but the best💚
@@KennaKrueger thank you! Today is a bit better thankfully! I also found this thing called an electric water bottle. It is portable and it is like a heat pack. I wanted to let you know because it might help you. Also therma care patches is also good. The back one is good for stomach cramps and it allows you to move around with it. Helps a lot with cramps and bloating pain. And I’m so happy you have this to cope. And I’m so grateful you share. It does suck but I have hope that I can get answers soon. I’m mostly worried about not being able to keep down my muscle relaxers and medicine. Everything else I can handle. My muscle relaxers (a very high does) helps my cramps which I am so happy for. I also have chronic pain meds that help. So I’m very lucky for that. There are also these pillows that are like the back of a chair. Those have been helping. They might help you why you so and do crafts. I love using them for that. I hope these things help you. Have an amazing day ❤️
Girl I so feel for you! The shit we have to deal with from doctors as chronically ill young women is bloody ridiculous! I've been watching your vlogs for a few months now and it makes me so angry to see all the gaslighting shit you've had to deal with. I really hope you are able to find some good doctors that actually have half a brain and are caring. This probably isn't helpful for you but from everything I've seen on your vlogs (your fingers/wrists/elbows/knees are defs hypermobile) I'm so surprised no one has assessed you for EDS yet. Glad you got your formula sorted, hope your body agrees with it! Hope your tube change goes smoothly next week. P.S. LOOOOOOVE your decorating skills, your sewing room is looking sooooo good!
This issue was definitely something I did not expect when becoming chronically ill but it seems like it is a pretty common issue which makes me so sad! I hope I am too. I have been told by one GI awhile back that I appear hypermobile but that was the extent of it. My current GI hasn't mentioned it and I have a hard time knowing when to advocate for testing or if it is just me overthinking. I guess that is something to consider asking my GI at my next appointment although I may chicken out haha. The main thing that has stopped me is that I don't dislocate and I don't think I sublux which I know are big symptoms of EDS. So far my formula is going well and my tube change went well too so I am hoping things continue to go up from here! And thank you so much I absolutely love my sewing room!
@@KennaKrueger I have hypermobile Ehlers Danlos syndrome, but don't dislocate or sublux like other EDS people do. Since there are 13 different types, and each patient can present with varying signs and symptoms, it can be difficult to diagnose. If you Google EDS, you'd likely see a lot of results for the more extreme variants. Look up RUclips user Izzy Kornblau, who has hEDS and gastroparesis, and you'll find a great video that walks you through the hEDS criteria. By watching that video, you can see if you relate to enough of the criteria to warrant advocating being screened.
Yeah, the gaslighting issue is rough. Bringing a friend of family member with you to appointments is key to help reduce gaslighting and dismissiveness. Just having someone else int he room to advocate and to help take notes is super helpful.
sorry you had a bad experience with the doctor lovely 😢 could you do a video on what you take in your bag to hospital appointments and also if you have an emergency hospital bag x
I think it's a good idea to show every reality we face with gp, especially when doctors treat us terribly. I had a good cardiologist but have had terrible gastroenterologists. Sorry it was a rough appointment, i totally understand that frustration when their egos get in the way. Glad you had some wins in your week though! Those can definitely make a huge difference.
aww thank you, it is definitely hard to open up about it but I am glad I did because I know I am not alone! Finding good doctors can be tough, and I hope we can both get the treatment we need soon! I am glad I had some wins too and they definitely did make a big difference!
@@KennaKrueger You are definitely not alone. Every doctor I've had out here has treated me like that and it takes a huge mental toll. No one talks about the PTSD you get just from doctors and nurses and just dealing with the medical system so I'm glad you're sharing. Here's to hoping we get the care all of us need! Hope you have some more wins Kenna!
I am so sorry to hear that you are consistently treated like that, it will definitely take a toll on you! Thank you so much and I hope we all get some wins too!
You go girl! That doc didn’t sound what you needed at all. 💯 you were right! I know what you mean by things spiralling out of control it’s hard to deal with 💚💚yay for the formula delivery, so hope it will work for you! I passed out on my tilt-table test 🙈🙈I also have POTS & autonomic neuropathy as well as peripheral neuropathy xx
I passed out during my tilt-table test as well, and the nurse really freaked out. Thankfully the POTS diagnosis helped me get on Pyridostigmine to treat both my POTS and my gastroparesis with a single medication. Hoping your doctors have found the treatment that works best for you.
@@Dulcimerist bless you it freaked me out more than anyone else haha waking up was weird they were like errr yeah you had a syncope attack lol ooops! At least it led to my medication Midodrine helping me somewhat and inadvertently another med for bladder spasms mirabegron raises my bp enough so that I don’t pass out anymore but just get a bit dizzy that along with as much extra fluids, electrolytes via my J tube and salt stick help me too x
@@MOJORAPSCALLION Has your blood pressure gotten too high on the Midodrine? That one is a bit archaic for treating syncope, by just raising BP by brute force instead of addressing the underlying cause. It does work well for some people, though. I have some funky vascular issues from my Ehlers Danlos that isn't compatible with Midodrine.
i feel you on the rough doctors appointments. i had one yesterday where i had to get a lot of blood work to check for anemia or whatever and the lady kept poking me and then taking the needle out and blaming my veins for being too small. she tried 4 times before i got dizzy and passed out. i then got horribly nauseous and i threw up everywhere from the dizziness. im emetophobic so throwing up is really hard for me and i had several panic attacks afterwards. they wouldn’t let me leave until i calmed down. this whole event keeps playing over and over again in my head and it sucks so bad to remember, but your videos really help distract me. i really appreciate you and your uploads 💚
aww no I am so sorry to hear that :( You should never be blamed for something you can't control. And I am so sorry to hear about you throwing up. I have some degree of emetophobia too and would struggle with vomiting so I know that must have been so hard on you. It is going to take some time to heal from that so it is okay to still be frustrated and anxious and sad from that situation. Just take things one step at a time and you got this! I appreciate you are your support💚
That's horrible! I'm sorry you had a bad phlebotomist! I have issues like this as well, due to my Ehlers Danlos syndrome. To make blood draws go easier, always request that they use a butterfly needle, which is much more maneuverable and can pin down veins and prevent issues like these. Also, before the phlebotomist pokes you, have them warm up your arm with a hot dry towel to help dilate the veins and make the blood draw much easier!
Hey girl! Your frustration is totally understandable! And you have every right to feel that way and let out how you feel! I’m glad you stood up for yourself because I think a lot of doctors feel they can just say whatever they want and we won’t judge or say a thing. But we have a right to do our own research and decide for ourselves after all it is our bodies! I have sickle cell anemia and my mom is a doctor and my dad is a pharmacist and even though there’s a lot more understanding with sickle cell there are still a lot of ignorant doctors out there plain and simple so my parents have taught me how it’s so important to stand up for yourself! Much love from Maryland!
Thank you so much! This validation is so helpful! You are right, we know ourselves best so we should be able to stand up for ourselves and advocate for our care and I am glad your parents taught you to do that as well! I am sending you love too!💕
Ps. Love that you’re real! You’re a star! I can sometimes tolerate watermelon I also cut it into rectangles and shove a lolly stick in it and freeze they make wonderful frozen lollies ✨✨ 🍉🍉
Don't apologize at all! I'm sure we have all experienced doctors like that before. I wouldn't want to start medications before testing either since most of the time you have to be off of those medications for the testing to be valid. I didn't have any luck with cardiology because my echo was completely normal...I found an autonomic specialist (neurologist) who ordered a tilt table test, a QSART test (sweat test) and a bunch of labs all while I was off of most of my medications for a week (even off of the anti-emetics). She ended up finding out I have Sjogrens and autoimmune autonomic neuropathy--a diagnosis which includes POTS, decreased sweat output, autonomic neuropathy, and whole gut dysmotility.
Yes that is also another good point! I want my tests to be as accurate as possible. Wow thank you so much for all of that information, I really did not know all of that was a thing. I am so happy you ended up finding an autonomic specialist who got you those answers. After my few other tests and my other cardiology and GI follow ups I might have to look into that or ask my GI for a referral. Thank you so much for this information!
Sorry you have all of those issues. I can relate to a lot of that. Out of curiosity, have they tried you on the Sjogren's medication Pyridostigmine? It can also be prescribed to treat both POTS and gastroparesis, which is the reason I'm on it - I have both of those issues.
@@KennaKrueger you're welcome! I got a referral from my motility specialist/GI upon reporting pots like symptoms that seemed more than just due to calorie deficiency...still don't have a treatment plan figured out yet, but I'm hoping some of the meds the autonomic specialist is starting me on will work as I am pretty much at the end of the road with my GI
@@Dulcimerist I'm sorry too! But wow, another person similar to myself! No, they have not. Currently, they have added carbidopa for nausea control and ivabradine to try and bring my heart rate down without altering my blood pressure. Immunomodulating medications have been mentioned to try if those two medications above are not efficacious enough, but I want to try and combat the underlying issue instead of putting bandaids on the symptoms! I have a follow up with my GI tuesday and then I'll be coordinating with the autonomic specialist since it seems like that'll be the best course of action right now
@@skylarweber9336 Ivabradine is a decent POTS medication - I haven't been on that one, but I've heard great things about it. Are they giving you anything for the dry mouth and eyes of the Sjogren's? That's what the Pyridostigmine treats. Pyridostigmine also helps the vagus nerve and parasympathetic nervous system (rest & digest functions), so it can treat POTS and gastroparesis right at the source for some people. It's a really nice prokinetic agent to help chronic constipation in addition to the gastroparesis, without having to use messy laxatives. My doctors like it because they can treat multiple issues with a single medication.
@@KennaKrueger thank you I have been suffering from my symptoms for nearly 2 years now and doctors have just been putting my symptoms down to stress and anxiety (when it’s clearly not) It’s annoying when you know your own body but doctors still think they know best. I’m so happy you stood up for yourself. But final they are starting to do some tests because I’m starting college soon I’m also getting tested for EDS and gastro paresis. X
I am so sorry you also had to go through the process of fighting for care because they think it's anxiety. So many of us have to go through that and it is so sad. I am so happy they are finally starting to do tests and that you get the answers and treatments you need soon!
@@KennaKrueger thank you so much it's so nice to know that other people are going through the same as me. Your videos really help me I always look forward to watching them on Saturdays !! Especially when I have had a bad hospital appointment it always cheers me up and takes my mind of things, thank you ☺️
@@marisaspencer4565 Hoping your testing goes well and that you can get some answers! POTS/dysautonomia can confuse doctors, since the hyperadrenergic type of POTS is caused by an overactive sympathetic nervous system - which is in charge of the "fight or flight" response. Since the "fight or flight" response is involved in dysautonomia and anxiety, many doctors can't tell the difference.
That cardiologist needs to remember their speciality! They should NOT be giving their opinion on gastro issues that are already being handled by a GI. I hate when doctors make us feel like we did not try hard enough to get nutrition and that we failed. Our bodies failed, not us. Heart issues can be scary. The bp machine should give you some good data. My bp runs low 90/60 and with propranolol it drops some to 80/50, but the med keeps my heart rate low which I need. Even with it my heart will randomly jump to 170-190. If you need someone to talk to let me know! I love your chair! It looks so comfortable.
Yes! I was so surprised he mainly talked about my GI issues when I came there concerned about my heart! I tried so hard to get nutrition and obviously don't want a feeding tube at my age but I also just want consistent nutrition and for me right now the way I get that is with a feeding tube. Heart stuff can definitely be scary! I am happy you found something that helps control your heart rate! And thank you so much!!
The pantry looks great. I especially like the fonts on the labels. I can’t understand fancy fonts, so these would be great for me. Sorry you had such a bad time at the Dr’s appointment. Things like this are so hard. Just curious, why do the videos sometimes jump? I’m looking forward to seeing the video next week on what’s in your feeding tube bag. In the UK we call that cereal Shreddies.
@@KennaKrueger The videos sometimes sort of jump. It mainly only seems to happen when you’re explaining something. Maybe it’s when you’ve edited or it could be my phone. I still enjoy your videos tho.
I have to say do not be sorry for your rant. We all feel that way at times and we all need to vent. We got each other’s backs. About your doc appointment, I have had so many like that. I walk out and start again with someone new. It’s so upsetting. I’ve cried many times over docs like that. I’m so sorry you had to go through that. About your feeling like you have to control things. You spoke my exact words that I say to others. I get so snappy at every little thing when my health situation is out of control. I feel like I have to have everything else in my life going smooth and organized or I get so upset and sometimes have anxiety attacks. Must be normal for us? Message me anytime and vent it out. You’re words could have been mine. Love ya girl. Take care.
Thank you so much I really appreciate that! I hate how difficult it is to fight for and get proper care for these illness. It is already exhausting enough to have these conditions but then having to go through all of this just to get care is even more exhausting. I am sorry you had to go through that as well. I am so glad I am not alone in feeling like that! I felt like I was being so nit-picky haha and felt bad for even complaining but it is comforting to know that I am not alone in this. Thank you so much for sharing and being there for me!
It's probably good that you're holding off on dysautonomia medications for the time being. I'm assuming it was a beta blocker like Atenolol or Propranolol or perhaps a calcium channel blocker like Verapamil the doctor mentioned - doctors love to throw those common pills at everyone for anything. With your gastroparesis, you'll need to be careful with oral blood pressure medications, since the absorption of medications will be different for you in comparison with other patients. Most doctors aren't very familiar with gastroparesis, and wouldn't be aware of this potential issue.
I should add that you absolutely do not want to take calcium channel blockers, due to that drug class being known to cause or worsen gastroparesis! Beta blockers have the potential to worsen gastroparesis, but it depends on the patient and which specific beta blocker is prescribed.
omg thank you for all this helpful information, I never would have considered the absorption issue as well. I am still planning on holding off on the medication, however I also can't schedule my tilt table yet because of our covid cases here in Florida. For now I am okay with managing my symptoms without it but will definitely consider asking my GI about the medication next time I see him! Thank you again for this information!
@@KennaKrueger When you speak with your gastroenterologist, also ask about the prokinetic agent Pyridostigmine. Mayo Clinic has done a lot of research with this 75-year-old medication in treating gastroparesis. That's what I'm on for my motility issues since I don't tolerate the more common gastroparesis medications. Pyridostigmine has also normalized my POTS issues, due to its helpfulness with the vagus nerve. It also has a long track record for safety and low risk of side effects.
Hi watching this while being to scared to start reglan because of the side effects. My doctor didn’t explain anything he just gave me 3 more meds 😭. I’m tired but I’m here.
It took me a very very long time to try reglan, your concerns are very valid. Remember it is good to try medications because they might help and not have any side effects but if it doesn't feel right to you or the side effects are too concerning you also have the right to say no! And your doctor should definitely be explaining things to you. Meds are so much scarier to take when you don't know about them!
Definitely ask your pharmacist for a consultation to learn all about your medications. Pharmacists are the best resource that people often don't realize is available, and they can provide much better information than the doctors since they learn much more about medications than doctors.
Good on you kenna for sticking up for sticking up for yourself with doctors they can be a pain and oh my days your too young your too thin I would of been so mad you thin because you can eat it’s rude that only age cab make people have some illness’s when I’m late 30s yeah but my health was bad from early 20s they are exactly so sure that mine is EDS 💕I hate be like I know better than a doctor but no doctor so far has said how my large colon just gave up I can’t be the only person in this situation 💕
Hello! I am south korean and l also suffer from gastroparesis too 😢 I am going do to gpoem too. How does your gastric emptying time changed after doing gpoem surgery? I cannot understand your gpoem surgery video because i cannot speak english well.. thank you!
Good luck with the GPOEM! My gastric emptying seemed to improve for a little bit after surgery but then I ended up getting worse. However I don't want that to deter you because everybody responds to the surgery differently based on how their gastroparesis manifests! I wish you the best of luck and I hope it helps!
That's been my biggest pet peeve with figuring out my chronic illnesses the past few years. I knew I had endometriosis and when I went to a GI doctor in 2018 and being told that I was too young to have these health issues was infuriating.
It makes me so sad how we all have such similar experiences with this. Being "too young" doesn't mean anything. These illnesses don't have an age cut off!
We deserve a Nobel Peace prize for dealing with some doctors lol.Chances are that it is dysautonomia and not a heart problem , considering that gastroparesis is actually a form of dysautonomia.I hope that managing that in combination with the new formula will make a difference for you ❤️❤️
haha yes we do! And that is mine and my GI's guess too so hopefully I will get some answers soon! I am hopeful it will make a difference!
Agreed. Generally the heart will check out fine. The vagus nerve can cause both the POTS and gastroparesis, which is why the vagus nerve stimulating medication Pyridostigmine is prescribed to treat both issues.
Don’t ever feel bad for standing up for your self! You are your best advocate! And don’t apologize for the content you put on your channel. Chronic illness mostly sucks, so venting and telling about your struggles just shows you’re real and not fake!! You inspire me with your upbeat personality! But you’re allowed to be down sometimes! Give yourself some grace! I also have GP and other chronic illnesses too! I understand where you’re coming from. You do what you need to do! You do you boo! Lol!
Thank you so much that truly means a lot to me! I have definitely had a lot of struggles lately and I am so happy that you all have created a safe space for me to share them and get support and reassurance from. It seriously means so so much to me. Thank you so so much and I hope you have a wonderful week!💚
Hi Kenna, I wanted to say that I really appreciate you sharing your frustration and other feelings about your doctor appointment. In an earlier video in the comments I shared that my daughter, who just turned 20 yesterday (!) has had acute and chronic G.I. issues her whole life (plus hematology, urology, neuro, and most recently some possible cardiology issues as well). She transitioned from her pediatric specialty care providers to adult specialty care providers pretty much just as the pandemic began, which has made it really hard for her to communicate with them about her pain and symptoms etc., because they don’t have a real understanding of her history, nor familiarity with her rare condition, or that we might just know more about her health and treatment than they do! One of her first interaction with the new adult G.I. was a very funny email in which he said “well I suppose we could try this plan or that plan or is there anything you’d like to try?” Which she and I both found hysterical because it wasn’t often in the pediatric world where specialists would give either of us an opinion on how things should really move forward! Anyway, I think you felt a little bad perhaps that you were sharing all of those frustrations and feelings, but I totally want to let you know how much I appreciate you doing just that. I completely understood (as much as a parent of a daughter in a similar situation CAN understand :o) all that you shared…and if it means anything to you, it makes perfect sense to me that this whole new unfamiliar area of cardiology, that you might have concerns with starting a treatment for which you don’t even have a diagnosis yet, as well as just your general concerns and fears. That’s a really hard part to negotiate, when you have a new specialist who maybe just doesn’t have the best bedside manner and is kind of an idiot and isn’t really listening to you, well unfortunately that’s very familiar to me but it certainly doesn’t make it right. All right, well now I’m babbling. I can’t wait to show my daughter this vlog in particular. I think she’ll really identify with your frustrations and get some thing out of it. Once again I admire you and your positive attitude and getting word out about Gastroparesis, and remaining productive with your crafts and home decorating. Great job and keep doing what makes you happy. 💜
Thank you so much that means a lot to me! I always get so nervous sharing negative things in fear it will be taken the wrong way. Going from pediatric to adult care is always such an intimidating thing, like you said because they don't know the history! I hope things start to work themselves out with your daughters care! Thank you so much for validating my feelings that seriously means a lot to me! And thank you so much for your kind words! Comments like these seriously make my day💚
I look forward to your videos. They are one of my highlights. My health keeps getting worse. I have cerebral palsy and many other conditions. I finally got to my doctor again and she told me she didn’t know why I can’t eat and now I have to wait a month to see a GI doctor’s assistant because there’s no GIs available. I’ve been forcing myself to eat and then getting the worst cramps in my upper abdomen. We are also worried about POTS or inner ear problems that can cause hearing loss. When I watch your videos It reminds me I’m not alone and things can be ok. I know you still have all your bad days and moments but you have this energy about you that’s so comforting. Thank you for sharing. It’s so great. I’m actually tearing up. Sorry if this is a mess or anything.
aww thank you so much that truly means a lot to me! I am so sorry to hear that your health is worsening. The waiting to see doctors while you suffer with your symptoms is so tough and so is the forcing yourself to eat. I really hope you are able to get more things figured out soon. Thank you again for your kind words because those are what keep me going through my bad days. You are so so kind thank you💚 Wishing you nothing but the best💚
@@KennaKrueger thank you! Today is a bit better thankfully! I also found this thing called an electric water bottle. It is portable and it is like a heat pack. I wanted to let you know because it might help you. Also therma care patches is also good. The back one is good for stomach cramps and it allows you to move around with it. Helps a lot with cramps and bloating pain. And I’m so happy you have this to cope. And I’m so grateful you share. It does suck but I have hope that I can get answers soon. I’m mostly worried about not being able to keep down my muscle relaxers and medicine. Everything else I can handle. My muscle relaxers (a very high does) helps my cramps which I am so happy for. I also have chronic pain meds that help. So I’m very lucky for that. There are also these pillows that are like the back of a chair. Those have been helping. They might help you why you so and do crafts. I love using them for that. I hope these things help you. Have an amazing day ❤️
Girl I so feel for you! The shit we have to deal with from doctors as chronically ill young women is bloody ridiculous! I've been watching your vlogs for a few months now and it makes me so angry to see all the gaslighting shit you've had to deal with. I really hope you are able to find some good doctors that actually have half a brain and are caring. This probably isn't helpful for you but from everything I've seen on your vlogs (your fingers/wrists/elbows/knees are defs hypermobile) I'm so surprised no one has assessed you for EDS yet.
Glad you got your formula sorted, hope your body agrees with it! Hope your tube change goes smoothly next week.
P.S. LOOOOOOVE your decorating skills, your sewing room is looking sooooo good!
This issue was definitely something I did not expect when becoming chronically ill but it seems like it is a pretty common issue which makes me so sad! I hope I am too. I have been told by one GI awhile back that I appear hypermobile but that was the extent of it. My current GI hasn't mentioned it and I have a hard time knowing when to advocate for testing or if it is just me overthinking. I guess that is something to consider asking my GI at my next appointment although I may chicken out haha. The main thing that has stopped me is that I don't dislocate and I don't think I sublux which I know are big symptoms of EDS.
So far my formula is going well and my tube change went well too so I am hoping things continue to go up from here!
And thank you so much I absolutely love my sewing room!
@@KennaKrueger I have hypermobile Ehlers Danlos syndrome, but don't dislocate or sublux like other EDS people do. Since there are 13 different types, and each patient can present with varying signs and symptoms, it can be difficult to diagnose. If you Google EDS, you'd likely see a lot of results for the more extreme variants. Look up RUclips user Izzy Kornblau, who has hEDS and gastroparesis, and you'll find a great video that walks you through the hEDS criteria. By watching that video, you can see if you relate to enough of the criteria to warrant advocating being screened.
Yeah, the gaslighting issue is rough. Bringing a friend of family member with you to appointments is key to help reduce gaslighting and dismissiveness. Just having someone else int he room to advocate and to help take notes is super helpful.
sorry you had a bad experience with the doctor lovely 😢 could you do a video on what you take in your bag to hospital appointments and also if you have an emergency hospital bag x
It's okay, it ended up working out in the end! ooo that would also be a really good idea for a video, thank you!
I think it's a good idea to show every reality we face with gp, especially when doctors treat us terribly. I had a good cardiologist but have had terrible gastroenterologists. Sorry it was a rough appointment, i totally understand that frustration when their egos get in the way. Glad you had some wins in your week though! Those can definitely make a huge difference.
aww thank you, it is definitely hard to open up about it but I am glad I did because I know I am not alone! Finding good doctors can be tough, and I hope we can both get the treatment we need soon! I am glad I had some wins too and they definitely did make a big difference!
@@KennaKrueger You are definitely not alone. Every doctor I've had out here has treated me like that and it takes a huge mental toll. No one talks about the PTSD you get just from doctors and nurses and just dealing with the medical system so I'm glad you're sharing. Here's to hoping we get the care all of us need! Hope you have some more wins Kenna!
I am so sorry to hear that you are consistently treated like that, it will definitely take a toll on you! Thank you so much and I hope we all get some wins too!
You go girl! That doc didn’t sound what you needed at all. 💯 you were right! I know what you mean by things spiralling out of control it’s hard to deal with 💚💚yay for the formula delivery, so hope it will work for you! I passed out on my tilt-table test 🙈🙈I also have POTS & autonomic neuropathy as well as peripheral neuropathy xx
Thank you so much!! And I have very high hopes this formula will work for me! Oh no that does not sound fun but I am happy it lead to a diagnosis!
I passed out during my tilt-table test as well, and the nurse really freaked out. Thankfully the POTS diagnosis helped me get on Pyridostigmine to treat both my POTS and my gastroparesis with a single medication. Hoping your doctors have found the treatment that works best for you.
@@KennaKrueger thank you it did but I was kinda disoriented when I woke up from passing out! X
@@Dulcimerist bless you it freaked me out more than anyone else haha waking up was weird they were like errr yeah you had a syncope attack lol ooops! At least it led to my medication Midodrine helping me somewhat and inadvertently another med for bladder spasms mirabegron raises my bp enough so that I don’t pass out anymore but just get a bit dizzy that along with as much extra fluids, electrolytes via my J tube and salt stick help me too x
@@MOJORAPSCALLION Has your blood pressure gotten too high on the Midodrine? That one is a bit archaic for treating syncope, by just raising BP by brute force instead of addressing the underlying cause. It does work well for some people, though. I have some funky vascular issues from my Ehlers Danlos that isn't compatible with Midodrine.
i feel you on the rough doctors appointments. i had one yesterday where i had to get a lot of blood work to check for anemia or whatever and the lady kept poking me and then taking the needle out and blaming my veins for being too small. she tried 4 times before i got dizzy and passed out. i then got horribly nauseous and i threw up everywhere from the dizziness. im emetophobic so throwing up is really hard for me and i had several panic attacks afterwards. they wouldn’t let me leave until i calmed down. this whole event keeps playing over and over again in my head and it sucks so bad to remember, but your videos really help distract me. i really appreciate you and your uploads 💚
aww no I am so sorry to hear that :( You should never be blamed for something you can't control. And I am so sorry to hear about you throwing up. I have some degree of emetophobia too and would struggle with vomiting so I know that must have been so hard on you. It is going to take some time to heal from that so it is okay to still be frustrated and anxious and sad from that situation. Just take things one step at a time and you got this! I appreciate you are your support💚
That's horrible! I'm sorry you had a bad phlebotomist! I have issues like this as well, due to my Ehlers Danlos syndrome. To make blood draws go easier, always request that they use a butterfly needle, which is much more maneuverable and can pin down veins and prevent issues like these. Also, before the phlebotomist pokes you, have them warm up your arm with a hot dry towel to help dilate the veins and make the blood draw much easier!
thank you both so much for the tips and comfort. it means so much 🥺❤️
Hey girl! Your frustration is totally understandable! And you have every right to feel that way and let out how you feel! I’m glad you stood up for yourself because I think a lot of doctors feel they can just say whatever they want and we won’t judge or say a thing. But we have a right to do our own research and decide for ourselves after all it is our bodies! I have sickle cell anemia and my mom is a doctor and my dad is a pharmacist and even though there’s a lot more understanding with sickle cell there are still a lot of ignorant doctors out there plain and simple so my parents have taught me how it’s so important to stand up for yourself! Much love from Maryland!
Thank you so much! This validation is so helpful! You are right, we know ourselves best so we should be able to stand up for ourselves and advocate for our care and I am glad your parents taught you to do that as well! I am sending you love too!💕
Ps. Love that you’re real! You’re a star! I can sometimes tolerate watermelon I also cut it into rectangles and shove a lolly stick in it and freeze they make wonderful frozen lollies ✨✨ 🍉🍉
Thank you so much and oooo that sounds delicious, I never would have thought of that!
@@KennaKrueger give it a try if you don’t tolerate just the fruit in its natural state so refreshing on a hot day as a frozen lolly too! ♥️
Don't apologize at all! I'm sure we have all experienced doctors like that before. I wouldn't want to start medications before testing either since most of the time you have to be off of those medications for the testing to be valid. I didn't have any luck with cardiology because my echo was completely normal...I found an autonomic specialist (neurologist) who ordered a tilt table test, a QSART test (sweat test) and a bunch of labs all while I was off of most of my medications for a week (even off of the anti-emetics). She ended up finding out I have Sjogrens and autoimmune autonomic neuropathy--a diagnosis which includes POTS, decreased sweat output, autonomic neuropathy, and whole gut dysmotility.
Yes that is also another good point! I want my tests to be as accurate as possible. Wow thank you so much for all of that information, I really did not know all of that was a thing. I am so happy you ended up finding an autonomic specialist who got you those answers. After my few other tests and my other cardiology and GI follow ups I might have to look into that or ask my GI for a referral. Thank you so much for this information!
Sorry you have all of those issues. I can relate to a lot of that. Out of curiosity, have they tried you on the Sjogren's medication Pyridostigmine? It can also be prescribed to treat both POTS and gastroparesis, which is the reason I'm on it - I have both of those issues.
@@KennaKrueger you're welcome! I got a referral from my motility specialist/GI upon reporting pots like symptoms that seemed more than just due to calorie deficiency...still don't have a treatment plan figured out yet, but I'm hoping some of the meds the autonomic specialist is starting me on will work as I am pretty much at the end of the road with my GI
@@Dulcimerist I'm sorry too! But wow, another person similar to myself! No, they have not. Currently, they have added carbidopa for nausea control and ivabradine to try and bring my heart rate down without altering my blood pressure. Immunomodulating medications have been mentioned to try if those two medications above are not efficacious enough, but I want to try and combat the underlying issue instead of putting bandaids on the symptoms! I have a follow up with my GI tuesday and then I'll be coordinating with the autonomic specialist since it seems like that'll be the best course of action right now
@@skylarweber9336 Ivabradine is a decent POTS medication - I haven't been on that one, but I've heard great things about it.
Are they giving you anything for the dry mouth and eyes of the Sjogren's? That's what the Pyridostigmine treats. Pyridostigmine also helps the vagus nerve and parasympathetic nervous system (rest & digest functions), so it can treat POTS and gastroparesis right at the source for some people. It's a really nice prokinetic agent to help chronic constipation in addition to the gastroparesis, without having to use messy laxatives. My doctors like it because they can treat multiple issues with a single medication.
I am getting tested for POTS and having the tilt table test. I hope everything goes well xx
Good luck, I hope it all goes well for you too!!
@@KennaKrueger thank you I have been suffering from my symptoms for nearly 2 years now and doctors have just been putting my symptoms down to stress and anxiety (when it’s clearly not) It’s annoying when you know your own body but doctors still think they know best. I’m so happy you stood up for yourself. But final they are starting to do some tests because I’m starting college soon I’m also getting tested for EDS and gastro paresis. X
I am so sorry you also had to go through the process of fighting for care because they think it's anxiety. So many of us have to go through that and it is so sad. I am so happy they are finally starting to do tests and that you get the answers and treatments you need soon!
@@KennaKrueger thank you so much it's so nice to know that other people are going through the same as me. Your videos really help me I always look forward to watching them on Saturdays !! Especially when I have had a bad hospital appointment it always cheers me up and takes my mind of things, thank you ☺️
@@marisaspencer4565 Hoping your testing goes well and that you can get some answers! POTS/dysautonomia can confuse doctors, since the hyperadrenergic type of POTS is caused by an overactive sympathetic nervous system - which is in charge of the "fight or flight" response. Since the "fight or flight" response is involved in dysautonomia and anxiety, many doctors can't tell the difference.
That cardiologist needs to remember their speciality! They should NOT be giving their opinion on gastro issues that are already being handled by a GI. I hate when doctors make us feel like we did not try hard enough to get nutrition and that we failed. Our bodies failed, not us. Heart issues can be scary. The bp machine should give you some good data. My bp runs low 90/60 and with propranolol it drops some to 80/50, but the med keeps my heart rate low which I need. Even with it my heart will randomly jump to 170-190. If you need someone to talk to let me know!
I love your chair! It looks so comfortable.
Yes! I was so surprised he mainly talked about my GI issues when I came there concerned about my heart! I tried so hard to get nutrition and obviously don't want a feeding tube at my age but I also just want consistent nutrition and for me right now the way I get that is with a feeding tube. Heart stuff can definitely be scary! I am happy you found something that helps control your heart rate! And thank you so much!!
The pantry looks great. I especially like the fonts on the labels. I can’t understand fancy fonts, so these would be great for me.
Sorry you had such a bad time at the Dr’s appointment. Things like this are so hard.
Just curious, why do the videos sometimes jump?
I’m looking forward to seeing the video next week on what’s in your feeding tube bag.
In the UK we call that cereal Shreddies.
Thank you, I really like how the pantry turned out too! And what do you mean by jump?
@@KennaKrueger The videos sometimes sort of jump. It mainly only seems to happen when you’re explaining something. Maybe it’s when you’ve edited or it could be my phone. I still enjoy your videos tho.
I have to say do not be sorry for your rant. We all feel that way at times and we all need to vent. We got each other’s backs.
About your doc appointment, I have had so many like that. I walk out and start again with someone new. It’s so upsetting. I’ve cried many times over docs like that. I’m so sorry you had to go through that.
About your feeling like you have to control things. You spoke my exact words that I say to others. I get so snappy at every little thing when my health situation is out of control. I feel like I have to have everything else in my life going smooth and organized or I get so upset and sometimes have anxiety attacks.
Must be normal for us? Message me anytime and vent it out. You’re words could have been mine.
Love ya girl. Take care.
Thank you so much I really appreciate that! I hate how difficult it is to fight for and get proper care for these illness. It is already exhausting enough to have these conditions but then having to go through all of this just to get care is even more exhausting. I am sorry you had to go through that as well. I am so glad I am not alone in feeling like that! I felt like I was being so nit-picky haha and felt bad for even complaining but it is comforting to know that I am not alone in this. Thank you so much for sharing and being there for me!
It's probably good that you're holding off on dysautonomia medications for the time being. I'm assuming it was a beta blocker like Atenolol or Propranolol or perhaps a calcium channel blocker like Verapamil the doctor mentioned - doctors love to throw those common pills at everyone for anything. With your gastroparesis, you'll need to be careful with oral blood pressure medications, since the absorption of medications will be different for you in comparison with other patients. Most doctors aren't very familiar with gastroparesis, and wouldn't be aware of this potential issue.
I should add that you absolutely do not want to take calcium channel blockers, due to that drug class being known to cause or worsen gastroparesis!
Beta blockers have the potential to worsen gastroparesis, but it depends on the patient and which specific beta blocker is prescribed.
omg thank you for all this helpful information, I never would have considered the absorption issue as well. I am still planning on holding off on the medication, however I also can't schedule my tilt table yet because of our covid cases here in Florida. For now I am okay with managing my symptoms without it but will definitely consider asking my GI about the medication next time I see him! Thank you again for this information!
@@KennaKrueger When you speak with your gastroenterologist, also ask about the prokinetic agent Pyridostigmine. Mayo Clinic has done a lot of research with this 75-year-old medication in treating gastroparesis. That's what I'm on for my motility issues since I don't tolerate the more common gastroparesis medications. Pyridostigmine has also normalized my POTS issues, due to its helpfulness with the vagus nerve. It also has a long track record for safety and low risk of side effects.
Hi watching this while being to scared to start reglan because of the side effects. My doctor didn’t explain anything he just gave me 3 more meds 😭. I’m tired but I’m here.
It took me a very very long time to try reglan, your concerns are very valid. Remember it is good to try medications because they might help and not have any side effects but if it doesn't feel right to you or the side effects are too concerning you also have the right to say no! And your doctor should definitely be explaining things to you. Meds are so much scarier to take when you don't know about them!
Definitely ask your pharmacist for a consultation to learn all about your medications. Pharmacists are the best resource that people often don't realize is available, and they can provide much better information than the doctors since they learn much more about medications than doctors.
Good on you kenna for sticking up for sticking up for yourself with doctors they can be a pain and oh my days your too young your too thin I would of been so mad you thin because you can eat it’s rude that only age cab make people have some illness’s when I’m late 30s yeah but my health was bad from early 20s they are exactly so sure that mine is EDS 💕I hate be like I know better than a doctor but no doctor so far has said how my large colon just gave up I can’t be the only person in this situation 💕
Thank you! It is so tough to find answers and I hope you get some soon!
a tube change is not a surgery its a procedure..... and watermelon is ok on my stomach .... also u can make it into juice .
sorry for saying the wrong thing haha and thanks for sharing the watermelon juice idea that sounds like it would be really good!
Hello! I am south korean and l also suffer from gastroparesis too 😢
I am going do to gpoem too. How does your gastric emptying time changed after doing gpoem surgery? I cannot understand your gpoem surgery video because i cannot speak english well.. thank you!
Good luck with the GPOEM! My gastric emptying seemed to improve for a little bit after surgery but then I ended up getting worse. However I don't want that to deter you because everybody responds to the surgery differently based on how their gastroparesis manifests! I wish you the best of luck and I hope it helps!
Totally get the out of control feeling..... we already have a full plate... doesn’t take much to tip it.
yes exactly! I am happy to know I am not alone in this!
Zofran can cause heart issues
Hey kenna 💜💙
Hi!