She is SO high on her pain meds but SOOO adorable! And how amazing is she at describing, not only her current condition but her medical history and past surgeries, using CORRECT medical jargon, in her medicated state?! This grrl is a SURVIVOR.
Tell your mom, she's simply lovely. All she has to do is look at you and she will see herself. This is my first time seeing your Vlog. I will include you in my prayers. You are strong, with a fantastic support system. Live every day to the fullest. You are beautiful, and a precious gift from God! You just have a job to do by living and teaching others that you are much more than a diagnosis. Take care, God Bless!
How many staples did you have on that incision? I have hypermobile type Ehlers Danlos syndrome, and had a different surgery that cut me open in a similar manner. It took years to recover from having all of the abdominal muscles severed, accelerated degenerative disc disease, and caused issues from moving my intestines around. Thankfully it didn't result in hernias. Hoping you were able to avoid all of those issues! Chronic Intestinal Pseudo-Obstruction is now often managed with the gastroparesis medication Mestinon (Pyridostigmine) to avoid surgical complications.
I hope that you are feeling better now that you had the Colectomy. I also had mine removed as well as 1/3 of my Small Intestine. I had an Atopic Colon, which is also called Megacolon. From years of severe constipation, it had stretched my Colon severely damaging the muscles and nerves. So, my Colon lost the ability to contract and make it possible to have a B.M. I was actually excited to have it removed. I had an Ileostomy for 3 years until I was ready to have a J-Pouch revision done. I felt so much better after the Coloextomy that I almost did not go through with the J-Pouch surgery. I'm glad that I did although there have been rough times that continue to this day, namely Pouchitis, inflammation of the Pouch. It's just something that you have to learn to live with. I'm praying for you and that you are able to regain control of your life again. Keep strong.. You will get feeling better. It just takes time. You are a strong person and I know it helps in your recovery. Wishing you all the best. Take good care 💜
I have EDS too! GI issues really suck, and I’m right there with you. I noticed a lot of cool similarities between us during the video: I love Harry Potter, I use my vogmask constantly, I have mast cell and syncope, and I use the exact same feeding bags. (Am I the only one that thinks those blue caps are the WORST???) They’re so impossible to close! I wish you all the spoons in the world, stay strong, striped warrior.❤️❤️❤️
when i watched this video i was so still, people who complain about everything should count their blessings that they are not sick like you or any other person who is sick. Respect to you
Praying for your healing Cheyanne. You’re very strong and courageous. I’m twice your age and wish I had had such a perspective when I was 21. I have the trifecta as well, it’s hard. We are some serious tenacity don’t we? Xo
Oh my gosh, I never connected propofal use with progressive or new problems! Im so sorry this has happened to you! I am gonna say a prayer for you! God bless you!
My husband had cancer 7 years ago and had a colon resection. They removed a ft of his lower colon, just above the rectum. A half inch from needing a bag the rest of his life. So i understand some of what you're going through. It's awful. He has had a hell of a time but, we've slowly learned triggers and foods to avoid.
HI, I am glad I found you channel. I have a neuro muscular defect as well and I have classical ehlers Danlos syndrome. I am so sorry you are going through this! I am praying for you and wishing you a speedy recovery. Very true, at some point you don't even care anymore about your dignity, I feel you. hugs from a fellow zebra.
Sweetie, you haven't lost your dignity. You've simply found humour helps at times and you're brave! I wish you & your family nothing but the best always!🎄💝
Right around 3 minutes I felt so ANGRY! None of us should have to deal with any of this!. Bleeeehhh the contrast enemas are noooo fun!. I understand exactly what ypu mean about the "attack" and then subsiding, and back, etc (i was dx chronic illius after my X amount of obstruction). It is the WORST pain. I tried to call 911 feom my hospital room .
All the best for you Cheyanne! I hope that god looks over you and guides your health into the direction you want it to. And give you a angel to watch over you 24/7
Oh Cheyenne I am so sorry you are having to go through this right now! I am sending you so many gentle hugs and all the healing energy for you and your family 💜
I assume since this is Dec. 2018. The doctors attached a ileostomy by now. You are a very strong young woman. And luckily you have a loving husband who accepts the challenges involved. You also have your parents to help you get you thru these tough times! Stay close to all those that love you! You are a inspiration to others! God bless you always!
Sending big hugs to you and your family. Wishing you an uncomplicated and speedy recover. You have a great support system ! Your parents and fiancé rock! 💕💕💕💕
Hi Cheyanne - this is the first video of yours that I’ve seen, so I’m not sure what type of EDS you have. I was diagnosed with hypermobile EDS, but I have some symptoms that overlap the other types. And I have a weird genetic mutation that they do not know the significance of, if it has any at all. I dealt with pain and other symptoms for years before I was finally diagnosed at 36 years old. I cannot find a doctor in my hometown (which is actually a big city) who knows anything about EDS. So despite my many symptoms, my main treatment is pain control at a pain management clinic. However, they treat me like everyone else, and the procedures I’ve had to relieve pain in my spine have been absolutely awful! (Ineffective locals, slow healing, extreme bruising, etc..) I was on the fentanyl patch for about six years, with lortab for breakthrough pain. I recently told my doc I wanted to get off the patches (for various reasons) so they switched me to morphine. After a month, I had to cut the dose in half due to side effects. I still have lortab for breakthrough pain, but the pain is not very well controlled. I’ve been taking a beta blocker for almost 25 years - long before my diagnosis. I have inappropriate sinus tachycardia and orthostatic hypotension, yet my cardiologist won’t test me for POTS. I discovered, on my own, that high doses of two different antihistamines help quite a bit with GI symptoms, general malaise, and sometimes pain. Yet my primary care doc wasn’t interested in exploring the possibility of a mast cell disorder. I have a lot of GI issues, especially pain. But my GI doc said it is just IBS. About a month ago, I had a sudden, terrible pain in my side, which I think is my colon. I don’t have insurance because I lost my coverage when I got divorced, and I live alone now, so I didn’t want to call an ambulance to go to the ER. I loaded up on pain meds, and it eventually eased up. But I still have pain in that spot. I know I really need to get it checked out, but I’m afraid the tests alone would be thousands of dollars. And I don’t have faith that any local docs will take my EDS into account for diagnosis or treatment. Anyway...I’m so sorry you’re going through this. But I’m glad you seem to have docs who know what they’re doing (somewhat.) I really hope you are recovering well!! Gentle cyber hugs!
Hey! Join the EDS facebook group (the one with 30k people, just search Ehlers-Danlos in the search bar) and we have a list sorted by country, state, city, etc of EDS-literate professionals. As far as fearing that you have some kind of colon problem-- this may sound crazy but I would consider relocating to a state that will give you quick, free insurance (California!) and remaining there on state aid long enough to get all the tests and stuff that you want. I know it's hard to move with EDS but don't literally let yourself die from lack of testing. Another option is just to run up the medical debt and not pay it. Depending on the state you're in, it may not be "counted" as regular debt and may not affect your credit score. Look into it. Please see if there is a center for independent living (disability center) in your region and contact them for help. You may be able to get some kind of financial or legal counseling or assistance to deal with this cost/insurance situation.
Hi Cheyanne, you will pass all kinds of different colors. The neon yellow is bile. Eww, I had that cement, lol, put up my bum. Then they took pics as I passed it. Honestly, the worst part of a J-Pouch revision is the Pouchitis that never fails to begin within a couple of years afterwards. The Small Intestine was not meant to hold b.m. so it infects easily. I'm going to look in to a Cadaver Transplant of the Colon. Idk, I'm as sick of surgeries as you are. Best wishes to you, my fellow survivor. I'm keeping you in my prayers. Stay strong girl. You can do this.
Thinking of you lovely. Sending healing and preys yr way. I hope yr feeling a bit better soon. Keep fighting and try to stay stong. Princess warrior xx
Hun, I just came across your channel. You are brave, well versed...and my heart goes out to you....me being sorry I don't even have to say ad you surely can imagine, that I am. I am wishing you a very speedy recovery and a relaxed, joyful Xmas season. All my love!
Girl Im shockend I have eds to and itts getting slowly and more painfull and than I see you and think , that Im still sooo lucky that itts going sooooo slow on
OMG Cheyenne! I don't know who made me cry more today you or Hannah. Poor thing! I wish there were something I could do to help. Do you need anything while you're in the hospital? Do you feel comfortable telling us what hospital you're at? I'd love to send you some happy mail! I have to agree, that by the time we get to where we are, modesty disappeared a long time ago...The only thing worse than spoiled elecare is spoiled tpn😂 My mother was laying in my bed one day and insisted one of the cats peed in my room. The cats were never allowed in my room, so I knew that didn't happen. It turns out there was a used bag of tpn in the trash can and I forgot to take out the trash from my room! They always put 100 ml more of tpn in my bag so that if I fall asleep it won't run dry.Boy, does that stuff reek! I never associated Propofol with any of my complications. Several years sgo, I told my doctors there would be no more surgeries for me, because I am always worse after surgery than I was before it. I don't know if you qualify or are even interested in something like this, but once you are healed up, you may want to consider coming to Omaha for an evaluation at the multiorgan transplant clinic to see if you can get a new stomach, short bowel, and colon. I don't know if the MCAS would ruin the new organs or not. The doctor that diagnosed my Mast Cell Activation Syndrome is very knowledgeable and is at the same hospital as the transplant clinic as well. Hugs to you sweetie! I'm sending healing thoughts your way!!!
i just really really hope you get better, i will pray for you, and i know you will get better because you have the strength to be conscious and still record this bad moments as if you were walking in the park so i know you are strong you know you are strong and all your family support you, thanks for being amazing, crohns patient here, thanks.
I am so sorry that you guys have to go thru this. They all love you so much, it really is obvious that as much as they hate that you suffer you can see their relief in that you are still with them..💖 Hang in there sweetie
Oh my lard of mercy I've been rocked to the bone by what your going and been through. Can't wait for next vlog you got me well hooked on your story . Your so strong which is what you certainly need right now. 🙏🏾🇬🇧👍🏾
In the end, April just gone, I gave up and had my sigmoid, rectum and anus removed and a permanent ileostomy. I'm 42. My 'umbrella diagnosis' is a mystery. I had a hugely dilated colon with little peristalsis. I also have cervical myelopathy with a fusion at C5/6, degenerative disc disease, a chiari malformation, several subluxated joints, severe GERD, Osteoarthritis, a paralytic bladder, full retention which I drain with intermittent self catheterisation. Occipital neuralgia. I need a diagnosis. I've had 12 major surgeries and all they say is I'm a complex idiopathic case! Sighhhhh. Hugs andddddd try to have a good holiday season xxxxxxxxxxxxxxx ❤💜🧡💛💚💙
I stumbled across your videos. I hope that you can get relief & start feeling better. Even a little better will be better then nothing. I feel bad that you have to go through this and I am going to pray for you that things start looking up for you.
@8:52 okay. Now im smiling again. You are so stinking cute (heehee no pun intended) Shiiiiiit. Okay. I got comment at the end because i feel like im watching myself literally the last several months.
No, no fear of needles. I even have my PICC lines placed without any numbing, gas, or anesthesia. I happened to be at a different out-of-state hospital for a muscle biopsy and lumbar puncture. I was still in peds. The nitrous oxide was the first anesthetic given as they were beginning the process of putting me under.
Sorry you must indure this.. E.D.S. is truly a very hard disorder to go through cause it's 'always something'... breaking down, popping out and always causing severe or chronic pain! 😖 Thank you for sharing your experience to help people learn about our ehlers-danlos Community struggles. I have a page up at The Insufferable Movement on Facebook that talks about other issues that are effecting our and other chronic pain disease paients now, please visit:) Take Care Zebra 🦓 Warrior Princess!! Lindsay
its hormone related. progesterone makes the joints more lax. testosterone in men usually means greater muscle tone so joint laxity is noticed less, and so diagnosed less. Its not always correctly diagnosed, I meet the criteria for it, but getting diagnosed on the NHS is like walking through mud, when I asked a rhumatologist about it, the only person who can diagnose, they gave me that look and refused to diagnose me. its like some sort of taboo diagnosis.
@@skylaranderson3813 : The chromosomal differences between men and women are actually far greater than just the XX and XY chromosome thing. And as a result the same genetic mutations can express themselves differently in different sexes. It also has to do with hormones (see Faenum's comment). Also: women have stronger immune responses than men in general, making them more prone to developing an autoimmune disorder like, for example, Mast cell activation syndrome. And there are lots of differences like that that'll contribute to more severe presentations of Ehlers-danlos syndrome in women, versus men. That does not mean, however, that men can't get it, they can, and they do. But it can mean that it manifests itself differently in men than in women. More research is needed on the topic. And especially: more sexist research is needed on the topic. There are differences between the sexes in medicine. We need to learn more about those differences to better help both men and women. Therefore sexism in research is neccessary.
So instead of hunting down the correct NG they are going to risk a bowel perforation. That just doesn't sound smart. Sending positive thoughts your way 🤗❤️
Do you mind if I ask about the bladder stuff BEFORE the surgery? I have been KNOWN to never need to pee. Okay. Not pee alot. And would have to literally concentrate so hard to get it going. I had to get my port replaced (ugh. Again) and i feel like i pee sooo much more and it is like 'la di da, BOOM pee NOW" to best explain it hahaha.
Ask them to use a straight cath vs NG or Foley they might be long enough to decompress in low suction since whatever is in your bladder evidently is tolerated unless that is something they neglected. Consider Mayo Clinic and obtain legal counsel as well‼️
Random thought by looking at the comments it sparked me to wonder when the Human papillomavirus vaccine was instituted for twelve year olds??? Wondering if it is triggering something in their young symptoms. And even though diagnosed with EDS that some experience symptoms for years then " outgrow" them. I don't know maybe it takes a while for body to adjust or vaccine negative effects to wear off. Just a out loud kindA thought. Absolutely nothing research wise to suggest any link .
as a P.A. I can ensure you that propofol is a blessing. For junkies, even an Aspirin becomes a lethal weapon...but the world doesn't OWE drugtards to close down the entire pharmaceutical industry, as people who have REAL medical issues NEED these meds, desperately! So get a grip!
She is SO high on her pain meds but SOOO adorable! And how amazing is she at describing, not only her current condition but her medical history and past surgeries, using CORRECT medical jargon, in her medicated state?! This grrl is a SURVIVOR.
Your voice! The way you talk...I could listen to you talk forever!! Blessings. Praying you feel better and thrive. Sweet sweet girl!!
I also had a subtatoal colectomy. Hope you feel better.
Thanks. I hope you feel better also and that you have a speedy recovery! ❤️
Tell your mom, she's simply lovely. All she has to do is look at you and she will see herself. This is my first time seeing your Vlog. I will include you in my prayers. You are strong, with a fantastic support system. Live every day to the fullest. You are beautiful, and a precious gift from God! You just have a job to do by living and teaching others that you are much more than a diagnosis. Take care, God Bless!
How many staples did you have on that incision? I have hypermobile type Ehlers Danlos syndrome, and had a different surgery that cut me open in a similar manner. It took years to recover from having all of the abdominal muscles severed, accelerated degenerative disc disease, and caused issues from moving my intestines around. Thankfully it didn't result in hernias. Hoping you were able to avoid all of those issues!
Chronic Intestinal Pseudo-Obstruction is now often managed with the gastroparesis medication Mestinon (Pyridostigmine) to avoid surgical complications.
I hope that you are feeling better now that you had the Colectomy. I also had mine removed as well as 1/3 of my Small Intestine. I had an Atopic Colon, which is also called Megacolon. From years of severe constipation, it had stretched my Colon severely damaging the muscles and nerves. So, my Colon lost the ability to contract and make it possible to have a B.M. I was actually excited to have it removed. I had an Ileostomy for 3 years until I was ready to have a J-Pouch revision done. I felt so much better after the Coloextomy that I almost did not go through with the J-Pouch surgery. I'm glad that I did although there have been rough times that continue to this day, namely Pouchitis, inflammation of the Pouch. It's just something that you have to learn to live with. I'm praying for you and that you are able to regain control of your life again. Keep strong.. You will get feeling better. It just takes time. You are a strong person and I know it helps in your recovery. Wishing you all the best. Take good care 💜
I have EDS too! GI issues really suck, and I’m right there with you. I noticed a lot of cool similarities between us during the video: I love Harry Potter, I use my vogmask constantly, I have mast cell and syncope, and I use the exact same feeding bags. (Am I the only one that thinks those blue caps are the WORST???) They’re so impossible to close! I wish you all the spoons in the world, stay strong, striped warrior.❤️❤️❤️
when i watched this video i was so still, people who complain about everything should count their blessings that they are not sick like you or any other person who is sick. Respect to you
So Young and already so touched by this crap of illness. I wish you a good recovery. I hope the better for you.
Praying for your healing Cheyanne. You’re very strong and courageous. I’m twice your age and wish I had had such a perspective when I was 21. I have the trifecta as well, it’s hard. We are some serious tenacity don’t we? Xo
Oh my gosh, I never connected propofal use with progressive or new problems! Im so sorry this has happened to you! I am gonna say a prayer for you! God bless you!
My husband had cancer 7 years ago and had a colon resection. They removed a ft of his lower colon, just above the rectum. A half inch from needing a bag the rest of his life. So i understand some of what you're going through. It's awful. He has had a hell of a time but, we've slowly learned triggers and foods to avoid.
This girl should become a dr. She is like a medical student
HI,
I am glad I found you channel. I have a neuro muscular defect as well and I have classical ehlers Danlos syndrome. I am so sorry you are going through this! I am praying for you and wishing you a speedy recovery. Very true, at some point you don't even care anymore about your dignity, I feel you. hugs from a fellow zebra.
I have no idea how anyone could cope with this.
You do it because there is no choice
My 17 year ok'd daughter had Eds. Von Willebrands disease and Dysautonomia.
Sweetie, you haven't lost your dignity. You've simply found humour helps at times and you're brave! I wish you & your family nothing but the best always!🎄💝
Right around 3 minutes I felt so ANGRY! None of us should have to deal with any of this!. Bleeeehhh the contrast enemas are noooo fun!. I understand exactly what ypu mean about the "attack" and then subsiding, and back, etc (i was dx chronic illius after my X amount of obstruction). It is the WORST pain. I tried to call 911 feom my hospital room .
I love your mom she’s real.
Ohhhh my love I feel for you may God bless you and hope it gets better
I had that’s same effect with the echoes and the spinning it’s an aweful experience
Praying you feel better
All the best for you Cheyanne! I hope that god looks over you and guides your health into the direction you want it to. And give you a angel to watch over you 24/7
Oh Cheyenne I am so sorry you are having to go through this right now! I am sending you so many gentle hugs and all the healing energy for you and your family 💜
I assume since this is Dec. 2018. The doctors attached a ileostomy by now. You are a very strong young woman. And luckily you have a loving husband who accepts the challenges involved. You also have your parents to help you get you thru these tough times! Stay close to all those that love you! You are a inspiration to others! God bless you always!
Sending big hugs to you and your family. Wishing you an uncomplicated and speedy recover. You have a great support system ! Your parents and fiancé rock! 💕💕💕💕
That they do. Thank you!
Poor thing. Tell your mom, she is very pretty.
I’m a new subscriber and I couldn’t imagine your pain.
god bless hope u will be okay!
Hi Cheyanne - this is the first video of yours that I’ve seen, so I’m not sure what type of EDS you have. I was diagnosed with hypermobile EDS, but I have some symptoms that overlap the other types. And I have a weird genetic mutation that they do not know the significance of, if it has any at all. I dealt with pain and other symptoms for years before I was finally diagnosed at 36 years old. I cannot find a doctor in my hometown (which is actually a big city) who knows anything about EDS. So despite my many symptoms, my main treatment is pain control at a pain management clinic. However, they treat me like everyone else, and the procedures I’ve had to relieve pain in my spine have been absolutely awful! (Ineffective locals, slow healing, extreme bruising, etc..)
I was on the fentanyl patch for about six years, with lortab for breakthrough pain. I recently told my doc I wanted to get off the patches (for various reasons) so they switched me to morphine. After a month, I had to cut the dose in half due to side effects. I still have lortab for breakthrough pain, but the pain is not very well controlled.
I’ve been taking a beta blocker for almost 25 years - long before my diagnosis. I have inappropriate sinus tachycardia and orthostatic hypotension, yet my cardiologist won’t test me for POTS.
I discovered, on my own, that high doses of two different antihistamines help quite a bit with GI symptoms, general malaise, and sometimes pain. Yet my primary care doc wasn’t interested in exploring the possibility of a mast cell disorder.
I have a lot of GI issues, especially pain. But my GI doc said it is just IBS. About a month ago, I had a sudden, terrible pain in my side, which I think is my colon. I don’t have insurance because I lost my coverage when I got divorced, and I live alone now, so I didn’t want to call an ambulance to go to the ER. I loaded up on pain meds, and it eventually eased up. But I still have pain in that spot. I know I really need to get it checked out, but I’m afraid the tests alone would be thousands of dollars. And I don’t have faith that any local docs will take my EDS into account for diagnosis or treatment.
Anyway...I’m so sorry you’re going through this. But I’m glad you seem to have docs who know what they’re doing (somewhat.) I really hope you are recovering well!! Gentle cyber hugs!
Hey! Join the EDS facebook group (the one with 30k people, just search Ehlers-Danlos in the search bar) and we have a list sorted by country, state, city, etc of EDS-literate professionals. As far as fearing that you have some kind of colon problem-- this may sound crazy but I would consider relocating to a state that will give you quick, free insurance (California!) and remaining there on state aid long enough to get all the tests and stuff that you want. I know it's hard to move with EDS but don't literally let yourself die from lack of testing. Another option is just to run up the medical debt and not pay it. Depending on the state you're in, it may not be "counted" as regular debt and may not affect your credit score. Look into it.
Please see if there is a center for independent living (disability center) in your region and contact them for help. You may be able to get some kind of financial or legal counseling or assistance to deal with this cost/insurance situation.
Hi Cheyanne, you will pass all kinds of different colors. The neon yellow is bile. Eww, I had that cement, lol, put up my bum. Then they took pics as I passed it. Honestly, the worst part of a J-Pouch revision is the Pouchitis that never fails to begin within a couple of years afterwards. The Small Intestine was not meant to hold b.m. so it infects easily. I'm going to look in to a Cadaver Transplant of the Colon. Idk, I'm as sick of surgeries as you are. Best wishes to you, my fellow survivor. I'm keeping you in my prayers. Stay strong girl. You can do this.
So sorry you are having such a rough time. I will keep praying for you.
Thinking of you lovely. Sending healing and preys yr way. I hope yr feeling a bit better soon. Keep fighting and try to stay stong. Princess warrior xx
Woah, trippy. I'm also a CheyAnne with EDS. Woah.
You are so articulate
Sooo sorry you have to suffer daily with your disease ..Hope that your doing better.
Hun, I just came across your channel. You are brave, well versed...and my heart goes out to you....me being sorry I don't even have to say ad you surely can imagine, that I am.
I am wishing you a very speedy recovery and a relaxed, joyful Xmas season.
All my love!
Girl Im shockend I have eds to and itts getting slowly and more painfull and than I see you and think , that Im still sooo lucky that itts going sooooo slow on
Oh wow, what a big procedure to go through. :( Sending some healing vibes
I feel so Sorry sorry for you
OMG Cheyenne! I don't know who made me cry more today you or Hannah. Poor thing! I wish there were something I could do to help. Do you need anything while you're in the hospital? Do you feel comfortable telling us what hospital you're at? I'd love to send you some happy mail! I have to agree, that by the time we get to where we are, modesty disappeared a long time ago...The only thing worse than spoiled elecare is spoiled tpn😂 My mother was laying in my bed one day and insisted one of the cats peed in my room. The cats were never allowed in my room, so I knew that didn't happen. It turns out there was a used bag of tpn in the trash can and I forgot to take out the trash from my room! They always put 100 ml more of tpn in my bag so that if I fall asleep it won't run dry.Boy, does that stuff reek! I never associated Propofol with any of my complications. Several years sgo, I told my doctors there would be no more surgeries for me, because I am always worse after surgery than I was before it. I don't know if you qualify or are even interested in something like this, but once you are healed up, you may want to consider coming to Omaha for an evaluation at the multiorgan transplant clinic to see if you can get a new stomach, short bowel, and colon. I don't know if the MCAS would ruin the new organs or not. The doctor that diagnosed my Mast Cell Activation Syndrome is very knowledgeable and is at the same hospital as the transplant clinic as well. Hugs to you sweetie! I'm sending healing thoughts your way!!!
Get well Cheyenne🎍🎍🎈🎈🎈🎈💖
i just really really hope you get better, i will pray for you, and i know you will get better because you have the strength to be conscious and still record this bad moments as if you were walking in the park so i know you are strong you know you are strong and all your family support you, thanks for being amazing, crohns patient here, thanks.
I am so sorry that you guys have to go thru this. They all love you so much, it really is obvious that as much as they hate that you suffer you can see their relief in that you are still with them..💖 Hang in there sweetie
Oh sweet girl im.praying for you. I have a sneaking suspicion none of those doctors are good and honest people
Oh my lard of mercy I've been rocked to the bone by what your going and been through. Can't wait for next vlog you got me well hooked on your story . Your so strong which is what you certainly need right now. 🙏🏾🇬🇧👍🏾
Hi, I lost a meter of colon to vulvus last year. I have an end colostomy
I am sorry that happened. I hope you had a speedy recovery!
In the end, April just gone, I gave up and had my sigmoid, rectum and anus removed and a permanent ileostomy. I'm 42. My 'umbrella diagnosis' is a mystery. I had a hugely dilated colon with little peristalsis. I also have cervical myelopathy with a fusion at C5/6, degenerative disc disease, a chiari malformation, several subluxated joints, severe GERD, Osteoarthritis, a paralytic bladder, full retention which I drain with intermittent self catheterisation. Occipital neuralgia. I need a diagnosis. I've had 12 major surgeries and all they say is I'm a complex idiopathic case!
Sighhhhh.
Hugs andddddd try to have a good holiday season xxxxxxxxxxxxxxx
❤💜🧡💛💚💙
Poor baby girl she is so pretty young age she have to go through
Wish you speedy recovery and back stronger and happy as you always be. Much love to you 🌹
Love to you too!
Oh dear praying for you to get well soon hope you won't be in the ozzy too long and they let you out soon x
You are beautiful. Wow. You should be modeling. I can't tell you how sorry I am that you suffer this way. My God.
I stumbled across your videos. I hope that you can get relief & start feeling better. Even a little better will be better then nothing. I feel bad that you have to go through this and I am going to pray for you that things start looking up for you.
Thank you for sharing your story
@8:52 okay. Now im smiling again. You are so stinking cute (heehee no pun intended)
Shiiiiiit. Okay. I got comment at the end because i feel like im watching myself literally the last several months.
I am confused. Why did you need nitrous oxide for an iv insertion? They really are not painful. Do you have a fear of needles?
No, no fear of needles. I even have my PICC lines placed without any numbing, gas, or anesthesia. I happened to be at a different out-of-state hospital for a muscle biopsy and lumbar puncture. I was still in peds. The nitrous oxide was the first anesthetic given as they were beginning the process of putting me under.
@@HospitalPrincess thank you for replying. I am so sorry for all you are dealing with medically.
Sorry you must indure this.. E.D.S. is truly a very hard disorder to go through cause it's 'always something'... breaking down, popping out and always causing severe or chronic pain! 😖 Thank you for sharing your experience to help people learn about our ehlers-danlos Community struggles. I have a page up at The Insufferable Movement on Facebook that talks about other issues that are effecting our and other chronic pain disease paients now, please visit:) Take Care Zebra 🦓 Warrior Princess!! Lindsay
Why does it seem like young women are the ones getting this (formerly unheard of) illness?
I think it was almost always misdiagnosed, but it is now diagnosed correctly. I think it also may be Y chromosome related.
mmm1347 maybe it’s just young women that enjoy vlogging it 🤷🏽♀️
its hormone related. progesterone makes the joints more lax. testosterone in men usually means greater muscle tone so joint laxity is noticed less, and so diagnosed less. Its not always correctly diagnosed, I meet the criteria for it, but getting diagnosed on the NHS is like walking through mud, when I asked a rhumatologist about it, the only person who can diagnose, they gave me that look and refused to diagnose me. its like some sort of taboo diagnosis.
@@skylaranderson3813 : The chromosomal differences between men and women are actually far greater than just the XX and XY chromosome thing. And as a result the same genetic mutations can express themselves differently in different sexes. It also has to do with hormones (see Faenum's comment). Also: women have stronger immune responses than men in general, making them more prone to developing an autoimmune disorder like, for example, Mast cell activation syndrome. And there are lots of differences like that that'll contribute to more severe presentations of Ehlers-danlos syndrome in women, versus men. That does not mean, however, that men can't get it, they can, and they do. But it can mean that it manifests itself differently in men than in women. More research is needed on the topic. And especially: more sexist research is needed on the topic. There are differences between the sexes in medicine. We need to learn more about those differences to better help both men and women. Therefore sexism in research is neccessary.
@@FaenumVena so women are naturally more flexible than men?
You’re awesome keep being you
I call it a yoohoo. God bless you sweetie! Sending prayers.
Praying things turn up for you!! You’re so strong through any crazy obstacles thrown your way!! 🙏🏻❤️❤️❤️
New subscriber. You’re so strong!!
So instead of hunting down the correct NG they are going to risk a bowel perforation. That just doesn't sound smart. Sending positive thoughts your way 🤗❤️
Your Mother is beautiful love her curls.....but I understand
Do you mind if I ask about the bladder stuff BEFORE the surgery? I have been KNOWN to never need to pee. Okay. Not pee alot. And would have to literally concentrate so hard to get it going. I had to get my port replaced (ugh. Again) and i feel like i pee sooo much more and it is like 'la di da, BOOM pee NOW" to best explain it hahaha.
She had sleep paralysis which is a terrible experience.
Bless your heart..many prayers sent ur way
Ask them to use a straight cath vs NG or Foley they might be long enough to decompress in low suction since whatever is in your bladder evidently is tolerated unless that is something they neglected. Consider Mayo Clinic and obtain legal counsel as well‼️
Have you Tried ketamine?
Not a good idea if she has bladder problems.
Random thought by looking at the comments it sparked me to wonder when the Human papillomavirus vaccine was instituted for twelve year olds??? Wondering if it is triggering something in their young symptoms. And even though diagnosed with EDS that some experience symptoms for years then " outgrow" them. I don't know maybe it takes a while for body to adjust or vaccine negative effects to wear off. Just a out loud kindA thought. Absolutely nothing research wise to suggest any link .
💖 hope your feeling uh brighter very soon & I also prayed for u & your family....
You my friend are a true warrior 🙌🏼🤙🏻
Sending prayers. 🙏❤
You are sweet, it is virtually impossible to hear you though, my volume is all the way up!
🙏🏻🙏🏻🙏🏻
Deus te abençoe Liinda 😍💖💖💖💖
Propofal gives me seizures. Mast cell reaction. That was a party.
❤ ❤ ❤ ❤ ❤
PROPOFOL IS EVIL AND SHOULDN'T BE USED!!!! HOPE YOU GET BETTER SOON 👍😥
as a P.A. I can ensure you that propofol is a blessing.
For junkies, even an Aspirin becomes a lethal weapon...but the world doesn't OWE drugtards to close down the entire pharmaceutical industry, as people who have REAL medical issues NEED these meds, desperately!
So get a grip!
Sending love form Curaçao , your in my prayers . 🙏 stay strong 💪🏾
🙏❤️💖🤗
🌺🧸🕊🌹❤️
🇹🇭🇹🇭💪💪❤❤❤🌷🌷🌷🌷
😱
((Hugs))
❤️🦓💪🏼
morphine high.............
Check out Maggie Baldwin and I have a Channel too
Hellacious???? Hellish. 😉
“Hellacious” is a word, and quite commonly used, at least in the southern U.S.