Isaiah 41:10 keeps me going on those really bad days-it gives me a lot of comfort!! U need to do what u need to do, & health ALWAYS is NUMBER 1!!! I’m glad ur feeling a little better, I really hope ur flare settles! Sending hugs, & prayers up for u! Hang in there!
Glad you got home sorry you got the flare. I am lucky I keep my pills down but struggle to eat much. You are doing amazingly well with vlogmas and I have really enjoying it. Love you 😘😘
Rachel dont worry about posting while im hospital.. Or explaining yourself. You do not need to justify your actions to anyone sweetheart. Everyone is different! And truly, the hospital is meant to be for rest and healing. I'm sorry that you very sick during this month. I know about having crappy holidays! But I just feel bad for you cause you are just the kindest soul. As always.. Your Mom and you will be in my prayers!
I'm so glad you are home. I'm so sorry to hear you haven't been feeling well. You are in my prayers. I like I'm sure all of your viewers have really enjoyed your daily Christmas vlogs they are like an awesome video advent calender📅🎁, but your health and peace of mind are #1. Thanks for the update GOD BLESS you, your loved ones and your health IJNwPA😊.
Hi! I’ve been subscribed to you for a bit. I believe Amy told me about your channel. I have Gastroparesis, POTS, lupus, and hashimotos. I have a Jtube, and a port for fluids at home. I’ll be getting to add to my collection soon with a gtube and gastric pacemaker. How do you like the pacemaker? Do you find it helps better? My surgeon said it’s like a 50/50 chance. Some people do great while others it doesn’t help so I’m nervous cuz she’s already done a pyloroplasty to help move food through faster and I still fail my gastric emptying study lol oooh gotta love Gastroparesis ;) Anyways I love meeting other warriors so I’m glad I found your channel. I do weekly vlogs on my health too if you ever need inspiration that you’re not alone. I’m so sorry you had to go to the hospital and hoping that them turning up your pacemaker and the fluids helped you some. Those were super cute sticker too btw! I can’t wait for my Bible study to start back up! And you’re absolutely right! Your health should be your #1 priority and I’m sure everyone will understand that ❤️❤️❤️ especially those that are warriors too! Looking forward to your next video!!
Did you get the gastric pacemaker? I'n curious to hear what it's like. My doctor put me on the vagus nerve stimulating medication Mestinon (Pyridostigmine), and it's been highly effective in treating my gastroparesis and POTS. It's the medication they try before resorting to surgical options. Had you responded to that one at all?
I'm undiagnosed (planning on getting diagnosed with hEDS and gastroparesis after I graduate) but I've been dealing with gastro flare ups since mid 2019. They've gotten worse everytime and I've only put 2 and 2 together recently that I have gastroparesis because I was heavily in denial. I've been stuck on the bathroom floor for hours just crying and begging for it to end and desperately drinking aspirin only to immediately throw up afterwards. I cant even open my eyes sometimes just because of the sheer amount of pain I'm going through. I just feel so frustrated and tired everytime and the fear knowing what's coming and not being able to do anything. I even begged to be taken to the hospital sometimes but my family helps me until the flare up is over. I had a smaller episode a few minutes ago and I'm still in pain just can actually move but I hate how just accidently drinking too much or eating too much because I was still so hungry can render me completely immobile. It's worse now because it seems like both my ribs are subluxated and it feels like the pain just mixed together to torture me even more. I've lost so much weight and it looks like my body is dying or something and I've been on my bed all day and I can feel my body get weaker. Idk I'm just ranting and watching this helped overcome my episode a bit. Only 17 and I fear a feeding tube isn't too far away ahead of me. Can't even take Advil because I don't want to risk stomach bleeding because I might need to take an aspirin suddenly. I have to use other methods for pain relief and it's so frustrating to hide it from my parents when I just want to tell them so it Isnt so difficult but I don't think they would be very accepting. Hope when I'm 18 I can get a weed card because I am very scared of becoming too dependent on oainkillers.
Sorry you're going through all of that. I have EDS, and can relate to some of what you typed. Definitely get a referral to a pain specialist who can help put together a multifaceted pain management program for you - people who have chronic pain conditions like EDS tend to have less issues with pain medications, if taken in small amounts at strict times each day. Avoid muscle relaxers, as those can be dangerous and lead to subluxations and dislocations. If your EDS gives you Mast Cell Activation Syndrome (MCAS), it can cause reactions with opioids. Low dose nightly Clonidine can help a bit with EDS pain, migraines, and sleep issues. Do you get POTS/dysautonomia issues? There's a medication called Mestinon (Pyridostigmine) that's popular for treating EDS patients because it can treat POTS, gastroparesis, and fatigue with a single medication. It's been a miracle medication for me, and is highly affordable. Hopefully you can find a really good doctor who is familiar with EDS and is up to date on the latest treatment options for EDS-related symptoms and health conditions.
Alyssa W's singing I have Gastroparesis too!! I vlog about it too and I have a feeding tube but if you google Gastroparesis diet there’s a lot of options. It is a lot of trial and error. Usually no veggies unless blended in a smoothie. Soups, soft foods, smoothies, yogurts, lean protein. Etc
gastroparesis is not a joke! i did a gastric emptying and had 40% of my food still not digested! i also have colitis. Chronic illness' deserve more awareness. SayStrong x
When I have a six day gastro flair I can not get pain meds and I want them just for when I flair nothing else works the pain is unbearable! I have gastroparesis and battle daily too! I can eat regular some days light to no eating for many days! It is so painful I just want a lil pharmo help to battle it but NO no n still suffering with no pain med help with my flairs! Am I the only one here that wishes this??? Six yrs almost seven now with no good resolve just battle till you die! Reglan is given for GP patients but 40% of the GP population can not tolerate this med and yes that is me! Miralax and suffering is the daily routine! Trying to not eat for eating is painful but then one has to relent n eat! I waited six hours in the er parking lot last flair then after eight hours no pain meds just suffering no help! When they gave me an iv it started without pain meds my stomach started feeling worse and I left the er worse then I went in! Once home I suffered two more hours till I put myself to sleep using otc sleeping pills:( I am a women of faith Jesus is my best GP friend not the doctors they offering miralax reglan and suck it up cupcake we can not help you as I cry desperately for pain control none is given;( Is anyone who have GP prescribe pain meds for flairs??? Thank you God bless you all :)
Isaiah 41:10 keeps me going on those really bad days-it gives me a lot of comfort!! U need to do what u need to do, & health ALWAYS is NUMBER 1!!! I’m glad ur feeling a little better, I really hope ur flare settles! Sending hugs, & prayers up for u! Hang in there!
rachael james I love that verse!!! ❤️❤️
That’s a great verse! Thank you
Glad you got home sorry you got the flare. I am lucky I keep my pills down but struggle to eat much. You are doing amazingly well with vlogmas and I have really enjoying it. Love you 😘😘
Thanks!
Evee Bubbles me too I struggle with eating lately I get very nauseous from eating I have gastroapresis
Evee Bubbles I struggle too :( I’m on a feeding tube now so I can only crush my meds.
Rachel dont worry about posting while im hospital.. Or explaining yourself. You do not need to justify your actions to anyone sweetheart. Everyone is different! And truly, the hospital is meant to be for rest and healing. I'm sorry that you very sick during this month. I know about having crappy holidays! But I just feel bad for you cause you are just the kindest soul. As always.. Your Mom and you will be in my prayers!
Thank you that means a lot!
I'm so glad you are home. I'm so sorry to hear you haven't been feeling well. You are in my prayers. I like I'm sure all of your viewers have really enjoyed your daily Christmas vlogs they are like an awesome video advent calender📅🎁, but your health and peace of mind are #1. Thanks for the update GOD BLESS you, your loved ones and your health IJNwPA😊.
Thank you so much your support means a lot
@@edsawarenesschannel you're welcome anytime😊
Glad you’re feeling a bit better now Rachel, lots of love 💕 💜💕💜💕💜
Thank you
Sorry about the flare; happy you're somewhat improved!
Thank you
The stickers are beautiful
They are!
So glad your feeling somewhat better Lovely one ❤️
You're so brave Rachel you're an inspiration to me ❤️
Thank you!
Hi! I’ve been subscribed to you for a bit. I believe Amy told me about your channel. I have Gastroparesis, POTS, lupus, and hashimotos. I have a Jtube, and a port for fluids at home. I’ll be getting to add to my collection soon with a gtube and gastric pacemaker. How do you like the pacemaker? Do you find it helps better? My surgeon said it’s like a 50/50 chance. Some people do great while others it doesn’t help so I’m nervous cuz she’s already done a pyloroplasty to help move food through faster and I still fail my gastric emptying study lol oooh gotta love Gastroparesis ;)
Anyways I love meeting other warriors so I’m glad I found your channel. I do weekly vlogs on my health too if you ever need inspiration that you’re not alone. I’m so sorry you had to go to the hospital and hoping that them turning up your pacemaker and the fluids helped you some. Those were super cute sticker too btw! I can’t wait for my Bible study to start back up! And you’re absolutely right! Your health should be your #1 priority and I’m sure everyone will understand that ❤️❤️❤️ especially those that are warriors too! Looking forward to your next video!!
I don’t find it magnificent but it does help somewhat.
Thanks for your lovely comment!
Did you get the gastric pacemaker? I'n curious to hear what it's like.
My doctor put me on the vagus nerve stimulating medication Mestinon (Pyridostigmine), and it's been highly effective in treating my gastroparesis and POTS. It's the medication they try before resorting to surgical options. Had you responded to that one at all?
💕💕💕
Im entering another flare up , I get scared sometimes but I know what it is
Mel Post it’s completely normal to be scared! A flare up is a really hard thing to go through
@@edsawarenesschannel Thanks 😊 🙏 my dr put in a referral for a feeding yesterday.
I'm undiagnosed (planning on getting diagnosed with hEDS and gastroparesis after I graduate) but I've been dealing with gastro flare ups since mid 2019. They've gotten worse everytime and I've only put 2 and 2 together recently that I have gastroparesis because I was heavily in denial. I've been stuck on the bathroom floor for hours just crying and begging for it to end and desperately drinking aspirin only to immediately throw up afterwards. I cant even open my eyes sometimes just because of the sheer amount of pain I'm going through. I just feel so frustrated and tired everytime and the fear knowing what's coming and not being able to do anything. I even begged to be taken to the hospital sometimes but my family helps me until the flare up is over. I had a smaller episode a few minutes ago and I'm still in pain just can actually move but I hate how just accidently drinking too much or eating too much because I was still so hungry can render me completely immobile. It's worse now because it seems like both my ribs are subluxated and it feels like the pain just mixed together to torture me even more. I've lost so much weight and it looks like my body is dying or something and I've been on my bed all day and I can feel my body get weaker. Idk I'm just ranting and watching this helped overcome my episode a bit. Only 17 and I fear a feeding tube isn't too far away ahead of me. Can't even take Advil because I don't want to risk stomach bleeding because I might need to take an aspirin suddenly. I have to use other methods for pain relief and it's so frustrating to hide it from my parents when I just want to tell them so it Isnt so difficult but I don't think they would be very accepting. Hope when I'm 18 I can get a weed card because I am very scared of becoming too dependent on oainkillers.
Best of luck to all of you :)
Sorry you're going through all of that. I have EDS, and can relate to some of what you typed. Definitely get a referral to a pain specialist who can help put together a multifaceted pain management program for you - people who have chronic pain conditions like EDS tend to have less issues with pain medications, if taken in small amounts at strict times each day. Avoid muscle relaxers, as those can be dangerous and lead to subluxations and dislocations. If your EDS gives you Mast Cell Activation Syndrome (MCAS), it can cause reactions with opioids. Low dose nightly Clonidine can help a bit with EDS pain, migraines, and sleep issues.
Do you get POTS/dysautonomia issues? There's a medication called Mestinon (Pyridostigmine) that's popular for treating EDS patients because it can treat POTS, gastroparesis, and fatigue with a single medication. It's been a miracle medication for me, and is highly affordable. Hopefully you can find a really good doctor who is familiar with EDS and is up to date on the latest treatment options for EDS-related symptoms and health conditions.
Hey lately I have been struggling with eating my gastroapresis i get nauseous and have bad acid when I do eat
It is a hard thing to deal with I have to take domperidone and anti nausea most days. ❤
Alyssa W's singing I have Gastroparesis too!! I vlog about it too and I have a feeding tube but if you google Gastroparesis diet there’s a lot of options. It is a lot of trial and error. Usually no veggies unless blended in a smoothie. Soups, soft foods, smoothies, yogurts, lean protein. Etc
That’s not fun
The Painted Zebra (EDS Awareness) nope it’s not not at all
gastroparesis is not a joke! i did a gastric emptying and had 40% of my food still not digested! i also have colitis. Chronic illness' deserve more awareness. SayStrong x
Thanks
When I have a six day gastro flair I can not get pain meds and I want them just for when I flair nothing else works the pain is unbearable! I have gastroparesis and battle daily too! I can eat regular some days light to no eating for many days! It is so painful I just want a lil pharmo help to battle it but NO no n still suffering with no pain med help with my flairs! Am I the only one here that wishes this??? Six yrs almost seven now with no good resolve just battle till you die! Reglan is given for GP patients but 40% of the GP population can not tolerate this med and yes that is me! Miralax and suffering is the daily routine! Trying to not eat for eating is painful but then one has to relent n eat! I waited six hours in the er parking lot last flair then after eight hours no pain meds just suffering no help! When they gave me an iv it started without pain meds my stomach started feeling worse and I left the er worse then I went in! Once home I suffered two more hours till I put myself to sleep using otc sleeping pills:( I am a women of faith Jesus is my best GP friend not the doctors they offering miralax reglan and suck it up cupcake we can not help you as I cry desperately for pain control none is given;( Is anyone who have GP prescribe pain meds for flairs??? Thank you God bless you all :)