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I’m super late to the party, but congrats on your drivers license! I’m sorry to hear about your stomach sensitivity diagnosis. That would be super frustrating to hear. How are you these days? Also-that cane is dazzling!

“I’m trying to keep myself alive, and that is a feat.” You said it! I hope you’ve been well since the making of this video. I have hEDS and was just recommended for several tests/procedures including the anorectal and esophageal manometry tests. Thank you for sharing your experience with candor and humor.

What was it a foreign object?

Hey becky hope you are ok

I use a wheelchair for the past 8 years since i have had Functional Neurological Disorder & Epilepsy & so find it very useful.

How did it start & what does the report shows?

Love you Becky! After 7.5 years of this my health system has called to say there's nothing more they can do for me. Which is interesting. Because aside from a diagnosis and ignoring my to wheelchair status they haven't done anything to begin with.

Its so annoying when i gasp i inhlae but god knows where it goes and mid night waking up is so bad for next day school... About love nah i dont advertise it dont need your pity love... Im scared to love actually so u say im jon snow..

Hey i think potrayal in fault in our stars novel was toooo much ... But movie was quite good except the sad parts you dont shout in pain you gasp for air..

I have Classical EDS type two and I had been tested for it last year but just got diagnosed with it this January of this year. Ugh, I had it all my life but it took me 48 years to find it out. My dad is the culprit for me catching it.

They think my 5 year old has vascular eds , we take her tomorrow for urgent genetic blood test x

What medication are you taking for the pots now?

I was prescribe florinef as well. I have migraines so scared to start it. My heart rate goes up to 120s when I stand up too from 60s resting.

To anyone starting their diagnostic journey if any of your Dr's give you a hard time switch Dr's immediately!

Wow I had a generic dna screening through 23andme years ago and the report showed high probility for hemochromotosis. I just had 27 viles of blood drawn within the last 2 days and oddly felt like I had more energy than normally. I wonder if there is a connection. I have pots and rapid gastric emptying syndrome too.

What's your new Instagram?

I just had the barium CT scan 2 weeks ago and the radioactive egg gastric emptying study. This week I had 27 viles of blood drawn. I go by myself to these Diagnostics. Within 30 mins of the gastric emptying study the food was exiting my stomach too and it felt awful. I have pots too. I was so sad the last 2 weeks. I hate how lonely I feel and how much life I'm missing out on.

Have you tried the carnivore/keto diet? Fruit, any carbs and dairy make my gi and nervous system symptoms worse.

Great to see a video I can finally comment on. It's 2022 now and found you searching for "gastric dumping syndrome". So far this year I got the pots and Dumping Syndrome diagnosis. I never thought I had EdS, but I heard they usually go hand in hand. I'm watching all of your videos as fast as I can. I've been sick for like 8 years gaslit all those years by Dr's. It seriously has been so traumatizing. I still get that energy from lots of Dr's. I'm so happy I found your channel. Cbd oil really helps me too. I look forward to watching the rest of your vids. Thanks for sharing your journey!!

How are you doing now honey ??? Xxxxx 💕💕💕

I hate chronic illness groups. I went to a few and man I came out so depressed. I actually find distraction and trying to get tiny bits of joy out of life is MUCH more positive for me, Displacement for me is the key. I think your coping brilliantly with your restrictions. Life can be crap but some days are better then others. Merry Christmas 🎄 xxxxx

Did this cause bad breath or body odor?

Another heds person here this video was really helpful now I know that I can say to the wheelchair specialist when I see them that It could be something to do with eds that my legs are giving way also has made me accept the fact I will be in one soon more

Did you improve?

Oh wow I wish I had found ypur channel sooner! I have quite a long story as well but I figured out years ago that I have porphyria, which is really hard to diagnose. I just recently got a diagnosis of dystonia, need to be evaluated for a movement disorder, and I may also be having seizures. And may have the trifecta of MCAS/EDS/POTS. Any or all of these condtions can be misunderstood, misinterpreted as psychogenic or simply overlooked. Besides that, I have been diagnosed with asthma, copd, gastroparesis, migraines, degenerative disc disease, scioliosis, ADHD, and early menopause. My symptoms are so complicated and changing I can't even explain them to my doctors. Most don't really seem to believe me, and I have been through a ton of invalidation and gaslighting. I have been told everything from maybe you are just dehydrated or need new shoes, to being accused of trying to commit disability fraud. Several have tried to attribute my symptoms to anxiety (one even called it "deep seated anxiety."). I have chronis sinus tachycardia, usually while standing or walking, or after eating, or with exposure to light. I wore a heart monitor for 3 weeks. The cardiologist treated me with contempt, saying, you triggered the alert on your heart monitor 85 times. Do you have anxiety? I said no. He just stared at me and kept repeating the question different ways, not wanting to accept no for an answer. He also never seemed to believe that my mother had a heart attack at 42 - several doctors have questioned this as if I must be mistaken, or making ut up. In this case she was sitting right there with me and told the cardiologist, but he brushed it off. We have 4 generations of heart problems through maternal lineage, but he had no interest whatsoever....what kind of cardiologist does even want to know your family history? The first time I had a stress test, he was convinced I had a heart problem, but after he ran more tests said everything was normal. My mother's heart also seemed totally normal before she had a heart attack. She had a collapsed artery, so I really wonder if we have vascular EDS. The cardiologist also didn't care that other doctors wanted me to be evaluated for dysautonomia. Basically all he would evaluate or treat is a literal defect of the heart. I am not sure he would even know how to evaluate that properly! I had no confidence at all in his opinion. He also lied to me about the reason why my insurance didn't approve an MRI. When I called him out on that, he dismissed me from his practice. I am glad to be done with him and move on to another cardiology practice. But another doctor wrote in my records that I was "very upset" about being dismissed from the cardiology practice, which is bizarre because I barely mentioned it and was not upset at all. I think those two doctors are buddies and probably gossipped about me. The other doctor also asked me if I had any history of anxiety or depression. I could tell so many stories! I found out one of my doctors has a prior felony conviction. Another one misdiagnosed me. I think probably a third of all doctors are idiots and should be run out of practice! They may get by okay on autopilot with the patients who have more common problems, but when they see a zebra or a unicorn they are absolutely clueless! I never wanted to be like this, I wish I could just live my life and work and not ever have to deal with the medical system at all!! But I must have won the lottery on weird genetic problems. I can relate to your story so much and have been through this so many times. To everyone out there going through similar experiences, you are not alone! You know your body best, and sometimes a doctor really doesn't know enough to evaluate you. They can have basic information wrong or misunderstand how to interpret test results. Or sometimes they just have a personal bias that gets in the way if seeing things clearly.

I also have functional dyspepsia. You should get on Desipramine nightly. It really dials down the pain and bloating. Also get FDGARD. Take it 30 minutes before meals it helps.

Welcome back! So glad to hear all you’ve been up to and congratulations on your house! Can’t wait for all the cheeky Bengal stories haha I’ve got two and they keep us on our toes!

Hi. I'm sorry. I just wanted to say thank you for posting, and, you are not alone.

🦓

Ugh, it's so frustrating how almost everybody I know with EDS had a hard time getting help and a diagnosis. I'm so sorry for what I can only assume was a very traumatic experience for Effie's parents. Thanks for sharing 🖤

Thankyou for sharing. I was devastated to hear about Amy's death as well. Her videos helped me in so many ways... as have yours. Please never feel any pressure to 'have' to upload, but know that I (and so many others I am sure) are grateful to hear from you. It helps to know that I... that we... are not alone in it all. Please be kind to yourself. Thankyou for sharing... for being you. We take what we can get, and we do the best we can with it.

I am a victim of medical gaslighting in the broken UK. I’m sofa ridden with a severe sore area inside my upper abdomen. Gone from a runner to someone who can’t walk far.

I have to say(from personal experience) that by the time you get to an anorectal manometry all dignity is gone... hope you are doing well, my anorectal manometry is in a few days.

Good day. I Had a very hard time to get any Dr to take me seriously. It even had my mom thinking I was looking for attention. Finally I spent 8 month in the hospital and now I am in a wheelchair? I have EDS way to go zebras. I have no one to talk to we live in a small town. I would love to talk to someone. I don't even know how to work my chair. I'm suffering I am. Having paiñ all the time and panic attacks . Thank you for your story

Hi Becky Thanks for sharing. What are these two boxes are called i would like to order.

i just want to let you know I am thinking about you and am hoping you are doing well and are safe. Especially now that we have this virus and can't get to the doctor.

thank you for making this video it made me feel a lot better about a concert I want to go to. I also have eds and pots and am feeling bad about the prospect of standing so long but it was nice to hear your experience including how you felt the next day

please help. "m being gaslit by my sons doctor. He has no strenght in his legs in often in a wheelchair , often falls and is as he"s to weak to stand and cries with the pain in his joints but because his blood tests came back as "normal" they wont do anyhting for him despite my pleading. last week they offered to refer him to a phychologist. l still find it hard to believe.

It's hard to find the right caregiver and it might be better to find a same-sex doctor as they can relate better. A younger doctor is less likely to be bombastic.

It's hard to find the right caregiver and it might be better to find a same-sex doctor as they can relate better. A younger doctor is less likely to be bombastic.

Me

Are you sure you don't have Lyme?

Justin Baldoni was actually pretty strong versed in the sense of the movie and the meaning and btw love the channel also Hollywood needs to quit romanticizing a lot like depression

When you were telling your story I think you said something that made me think anxiety for heart rate. But you should know how you were feeling. Also the heart rate should have been high before. Not sure you would make it rise. If somehow you were scared of when it rose sure. But would you really be that anxious about it. It is a very calm environment. I had the test and no heart raise, but I did have blood pooling so whatever you make of that. Oh and I get gaslighting all the time from co-workers about work or doctors. Doctors will say it is psychological or old age or everybody has that or they have that too and things like that when it is not true.

I was in a group for people with narcolepsy and had to leave for that exact reason. They were depressing, negative and so catty to one another. It was incredibly unpleasant.

Have you been tested for VEDS?

I take metoprolol and clonidine to help with POTS like symptoms ... medical gaslighting is a epidemic , specially for those with complex or nervous system related diseases. Effects the body top to bottom, brain, heart, stomach, skin, joints; almost everything

I'm glad to hear your positive spin on this. You seem in a better place. How is the job going? 🙏🏻💝

You may have the same conditions but they affect you differently no two people are the same

I think you look totally super hope the new job goes well and you keep smiling as you have a lovely smile.