I was diagnosed at 30 with depression then had hay fever then diagnosed with asthma then 10 years ago diagnosed properly with allergies to pet dander pollen etc - allergic rhinitis then not long after lost my taste n smell then diagnosed with nasal polyps. Then outta nowhere late last year a stressful event occurred n I started experiencing dyspena - hospitalised they just said it’s anxiety or copd… not sure how this can happen all of a sudden. So after much gaslighting from drs n specialists I researched n found that I most likely have mcas with histamine intolerance, I also get hives from pulling if the skin ie waxing. Now I’m getting asthma when I have a sauna, hot bath or shower!!! But the reactions to gluten, caffeine, chocolate, soy n alcohol have been a lot. I been on herbs n supplements along with low histamine diet for 2 months, no massive improvement. See my naturopath soon for follow up. Also have methane sibo. I’m sure I’ve forgotten other things I have but yeah it’s not fun at all. Very distressing n lonely.
Thank you for your honesty. Yeah, 54 when I got my diagnosis hEDS. I've been there. So many years of trying to be OK! Also, more recently I've gotten potentially fatal blood clots twice, assumed to be brought about by taking HRT once for 2 months. Thinking you could drop dead withing 2 minutes of every moment is a serious mindf*ck. I can't pretend I'm fine anymore.
Whoa, we're medical twins. I had the CCI fusion in 2019, you can see my surgery & recovery video on my channel if you're curious. I'm trying a new med called Veozah nor for my dysautonomia which hopefully will help temperature intolerance. (as of now I can't go out in the heat or freezing cold). I'm also in the midst of getting my small intestine evaluated for slow motility. UGH, the comorbidities that come along with hEDS are no joke. My therapist was ESSENTIAL! She helped me so much. Great video.
Thank you for this video. I stumbled upon it today and it was just what I needed to hear. My life this past year went from healthy to several serious chronic illness diagnosises. I feel overwhelmed. I have such little support. Learning who is there and not there, painful. I feel energized right now to make some changes into living with what I have and just risk it. Make new friends. Reevaluate how I even spend a day, now that I am not working. I am glad you addressed the toxic positivity, I have found that extremely painful and dismissing.
Thank you, thank you, THANK YOU for putting this out to the world! Keep sharing your story & info. I needed this information SO much. You may have saved me & just know that.
Don't get any more tattoos. The ink ends up in the lymphatic system. You don't need any more health issues. Mel Thompson was covered in tattoos and had EDS & POTS and she passed away a few years ago. Learn fr her. Don't tattoo!!
The best tips for me from this video were preparing for the possibility that people will leave you as you start to advocate for your needs, and the pne about dynamic disability. Every time Ive noted a certain thing as a trigger but it doesnt trigger me this one time, or this handful of times, I fall into the spiral that I really was making it up after all, that I'm a "hypochondriac," etc. That has been THE hardest thing for me. I don't have a diagnosis, but I have been troubleshooting with half-hearted doctors for two years now and am finally prepping to advocate for testing to see if I have POTS. I have a feeling it runs deeper than that, but this is a start and your videos have really helped me feel less alone through this process so far. Thank you.
I’m also in NorCal and i’m struggling to find specialists to go to. My PCP has been sending me to several specialists but to no avail…I really need help. I want some sort of control over my life.
As newly diagnosed just starting PT and oxygen therapy added to the handfuls of med taken daily, i look forward to an updated video. When you're ready, no pressure.
lol… I found your video at 420 likes. I agree with you about cannabis. I have a medical card where I live and it helps my mood, muscle stiffness and pain. Also agree with you about cutting all forms of toxicity and stress as it does a number on our dysautonomia. I’m three years into my diagnosis and just turned 50. I’d like to add that Hormone Replacement Therapy was started 4 months ago for me and also helping as I had terrible flares right before my menstrual cycle. I think declining estrogen is a big factor as women and it exacerbates EDS, Dysautonomia & MCAS. My gastroenterologist found my MCAS in my small intestine through a biopsy during an early colonoscopy a couple years ago.
Hello Kait, Thank you so much for sharing. You are a very well informed lady! I am impressed with all you have to share. My daughter is struggling with EDS and the many, many symptoms that come along. She is nearing 40 and the symptoms are becoming far more intense. We have been to of course many MD's over the years. I am very interested in finding out more about a specific physician with EDS that you mentioned in your talk, that sees patient once a year (?) with EDS (and she had EDS). Thank you so much for your time, and keep at it, you are an amazing person. I will keep wathing for your update shares.
I'm glad i found your videos. Ive been trying to self diagnose for over 10 years and it wasnt until the last year when I met some people who have helped guide me. My next step is finding a doc who can diagnose me. I doubt I will find it in the small town I live in.
Good stuff. You're doing a good thing by putting this out into the world. And I'm sorry you're dealing with it all. Yes, progressive condition: not a club you ever wanted to be in, but once you're in, there are great people there (who also don't want to be there! ha!) and who help with the required gallows humor. I don't have ED, (though I do have your garden-variety benign (giggle snort) joint hypermobility. Dx'd myself after series of events. big AHA! moment, explained a few things) I have a few other fun health challenges, the largest one at present being MS. I mention this because of what comes next, which is my suggestion that you take a look at trippingonair. Ardra Shephard is a favorite. Yes, it's MS-inflected, but overall it's about disability and progressive conditions. There will be much there that will resonate, trust me. And it will make you laugh. She has the emotional rollercoaster down pat. I'll just post the link to her post on "5 WAYS HOPE CAN SUCK WHEN YOU HAVE MS", one of my personal faves. And even though I've never done oral steroids (almost, once, but chickened out) her entry entitled "How To Treat An MS Attack With Steroids And Lies" is hilarious (and as always, a bit sad and wise). Anyway, her site will probably work for you too, plus she really is funny as hell. Give her writing a look. :) trippingonair.com/2019/05/5-ways-hope-can-suck-when-you-have-ms.html
From your first video what happened with the nodule on your thyroid? I have very similar symptoms to you and I also have the nodule on my thyroid. I have been told it’s hormonal related but I’m not convinced. Thanks
New subscriber here. I just found your channel(s) last night when I couldn't sleep due to the new moon (Is there anyone else with that issue?). You've brought back so many memories, especially of those most difficult days pre-diagnosis. I remember being told as a very little kid: "Pull yourself up by your bootstraps", "It's not possible to hurt everywhere", and the very skeptical " Yesterday, you said it was the other leg that hurt". That led to two decades of hiding my pain and trying to pretend to be normal. I'd blame my falls on tripping instead of being able to explain that my joints pulled apart, and I got the reputation of being clumsy. It's a lonely place, trying to fit in while knowing something is seriously wrong. I was finally diagnosed in my late twenties after not healing as expected from a car accident. That was in the late 1980's, however, and there was so very little information available. In a time before Google searches and RU-vid videos, I went to a medical school library to do my own research. Even there, the lack of information was disheartening. Eventually, I found the EDS Society. They were able to mail me a couple of very basic pamphlets that I could share with family and friends. So much was not known then, but I finally felt seen. In the decades since, my symptoms have progressed dramatically. In my mid-sixties now, I have a few pieces of advice: Do as much as you can while you can, especially things that will leave you with wonderful memories, while at the same time taking care not to strain your joints. Be open to accepting a motorized scooter, or even a wheelchair, before the day comes when you absolutely need one. They are just tools to aid your mobility. I wasted too many years trying to not look disabled, while watching opportunities pass by and my world get smaller. Surround yourself with caring, empathetic people. It's so destructive to do otherwise. And finally, get therapy if you need help dealing with the pain, grief and anger that comes along with disability. It has allowed me to dwell in a place mostly filled with peace and gratitude despite being essentially bedridden these days. One more note regarding the KT tape... For years, it was of tremendous help to stabilize my knees, shoulders, etc., but now it's too harsh. It seems my skin has gotten even more delicate with age. Now when I gently pull the tape off, it removes the top layer of skin. Any suggestions would be appreciated. Thank you so much for your postings. Wishing you less pain and more energy. Peace.
I have grown up with so much shame and a shaming family, that just blow off how I feel. Its been challenging to say the least. I was doing the best I have for years and boom! Feeling the grief, disappointment, AND how its time to prioritize what feels good and allow myself to let go of the fear about money, time, etc. Its requiring me to drop into DEEPER trust in something beyond me.
Why do you keep leaving hate comments about Kackie on your alts? "It’s bizarre to complain about views when her content has not improved or evolved. With TikTok taking viewers attention away from RU-vid, you have to do everything in your power to make your content stand out. It’s like that saying, “Insanity is doing the same thing over and over again and expecting different results.”"
Hi Kait - these two videos have been SO helpful to me. I have cried watching them both. I appreciate these deep dives into your conditions so much and I know it must be strange to share it with the world but I am so grateful you have, I am learning even more than I already have through you. I also watched your video on the BBL lasers for rosacea, as I struggle with that too but now I am wondering if it's not POTS? POTS also causes flushing - I'm not sure it would matter but curious if you've discussed this with any of your doctors? Thanks heaps again for putting this out there <3 Also, I'm 40 next month and STILL working on my diagnosis after 20+ plus years of trying to put random symptoms together and being told to put grains back in my diet 🙄
Can you please comment on the dysautonomia piece? What are you doing for that? Thank you for sharing your journey Kait. It means a lot to be seen and heard.
I kept getting dismissed before I finally was told I have heds, fibro and dysautanomia. Went thru so much testing. Pt made it worse then once I knew I had heds I found a pt specialist that knew about the condition so it’s helping a little now. But for a while drs just said they didn’t know what was wrong with me but didn’t want to try to figure it out neither. After getting dysautanomia I did not feel free anymore. It took over my whole life for a while and not being able to walk like I use to has made me pretty depressed
Hello Kait I and at least 3 of my 5 siblings have what you have. I am 65 and have been dealing with issues for 40 + years. It isn't fun. People didn't know about all this when we grew up. As a result we are more damaged than we should have been by working through this all that time. I applaud you for getting on top of this as soon as you have and hopefully you can do what is necessary to minimize as many symptoms of all this. I am in Wisconsin. All the best.
Seriously Kait I cannot thank you enough for making these videos. I really admire your honesty and bravery here. I just got my hEDS diagnosis today, I’m turning 34 in March and your video helped me calm down a lot. I was having some serious anxiety and grief like you talked about- I had some relief and gratitude also. I’m actually going to start a spreadsheet right now because I can absolutely see how keeping track of everything could get messy. lol. I don’t have a huge support system right now but knowing that you exist is really REALLY comforting. Haha. Thanks girl I look forward to more of your content. ❤
Thank you so much! I'm planning videos for this channel soon and I also have new diagnoses to share so will update soon. Now that I'm a year and a half out of my diagnosis I can say confidently that it can get better!
Ehlers Danlos Society Global Conference is in Philadelphia this year! Last year was in Ireland, summer 2025 it's in Canada. I'm currently doing the EDS ECHO Clinicians North America and learning tons. Multiple genes for hEDS have been identified; hoping we'll know which ones in the next two years. Currently the Connective Tissue Genetic Testing Panel on Invitae tests for the subtypes of EDS as well as aortopathies and other connective tissue disorders. If you post again and would like ideas on resources to share feel free to reach out. Thank you for your videos!
Thank you for making this part two!!!!! You give so much helpful information. I appreciate you. I wonder if u have ever been tested for Mold in your body? I just ordered the book “Breaking the Mold” (haven’t read it yet😜). I have SIBO, MCAS & guessing I have EDS (i have enough to pass the test-but not diagnosed by a Dr). I am hearing that Mold can cause SIBO & other issues (especially constipation & exhaustion,, which I deal with). Thank you for all the helpful tips. I too love alcohol & it was painful to quit 😘😜 Sitting by the fire just isn’t the same. Please make more videos as you learn!!! ❤
Kait! It’s been a while since you posted this, so I have to ask - how’s the tattoo doing? I’ve read/heard/been told we can’t get tattoos because they “don’t take” on our skin; that they would cause a reaction, or cause weird scarring, or basically the ink would be rejected by our skin. I’ve wanted to get one, but bc of all of the sources I’ve heard that from, I figured it would just be a waste of money and ugly ink blob, at best, and an ER visit at worst LOL.
Kait, I really relate when you talk about your childhood and your issues not being taken seriously and coaches even treating you poorly due to their ignorance. I tried to play soccer for a time and actually loved it, BUT every day at practice when we had to run laps, on about the 3rd lap I’d get really lightheaded then pass out and throw up. I’d come-to to my coach yelling at me in his heavy accent that I drank too much alcohol and mocking me saying I “got drunky on the alky and can’t do practice”, etc. I kept telling him I didn’t drink, much less get drunk and I don’t know why that happens. It was extremely embarrassing and he made it even more so. After that I didn’t even try to play any sports, even recreationally with friends. I was told growing up that I was just weak, the runt of the litter, had a low pain tolerance, and many other things until I believed them. Most memorably it was from the person that gave birth to me. So now getting validation that, for example, when I walked across the room in home economics and my knee dislocated up to my thigh wasn’t just weakness, it’s actually quite emotional. But even as an adult, my husband told me my periods were no worse than any other woman, I just had a low pain tolerance. Actually, I suffered with endometriosis for years before someone finally cared enough to do exploratory surgery and found that it was tied around several areas of my stomach so I couldn’t even cough without serious pain. Anyway, I wanted to thank you for sharing your story and the information you’ve learned on your journey. You’ve helped me a lot just with not feeling so alone, and I’ve already learned things about EDS that I hadn’t come across yet in my own research and bc I don’t have access to doctors in my state that are knowledgeable about these conditions. There are things you’ve shared about ‘connecting the dots’ between symptoms and EDS and comorbidities, that I knew nothing about but they FINALLY make sense thanks to you! ❤❤ (I have VEDS, MCAS and POTS)
Thank you for sharing your story. Have you found Lyme to be a factor for you? I was diagnosed with fibromyalgia first, then PFD, then Lyme, then hEDS, POTS, CFIDS, and more. I have cUTI (embedded UTI) too. I have been sick since I was 6 and did not receive the Lyme and EDS diagnoses until my 30’s.
All of my doctors have said I don't have any reason to consider Lyme's but it's on my list to look into if my hEDs/POTS/dysautonomia treatments don't work. My partner's Dad has Lyme's right now and I don't think it's a factor for me.
Oregano is amazing for menstrual cramps, my house is full of it, just be careful cause its abortive and you'll bleed a lot. I use it for my scalp (I have seb derm) but also for muscular pain, and is a mosquito repellent, i had being treating my hand pain with it, it does make you smell like a salad, but it does work! I'm still hoping to find a nice geneticist, my cardiologist are a bit not anti meds but more towards the mechanical approach of being better, which I kind of agree with but gets harder and harder when you have a lot of chronic pain, fatigue and adhd brain shit.
Thank you for saying what you did in the grief section. I have cried over my POTS diagnosis and countless gastro symptoms too many times. I need to be more patient with myself. This journey is not over but being patient to ourselves is key.
I really appreciate you sharing your experiences. I’ve had body problems my whole life but nothing compared to my son. He’s fifteen and he’s been dealing with chronic pain and illness for over five years. I have searched all over the country for knowledgeable doctors. My son’s diagnosis list includes hEDS, Craniocervical Instability with cervical medullary symptoms, Dysautonomia, Small Fiber Neuralgia, SIBO, Osteopenia, three other genetic variants/disorders, plus he has the anatomy for MALS, and he is currently on a trial treatment for MCAS. It’s a lot! It can be very overwhelming sometimes. Sometimes I see him in pain and I feel like I’m failing him. 😢 We took him on a cross country RV road trip because we wanted to inject some excitement into his life! He is a great kid, very smart, and he has big goals. Sometimes, when he is having pain or nausea or vertigo or brain fog, or nerve pain flare-ups, I wonder what his future will look like. I appreciate what you shared about LDN too. We are planning to start him on that after his MCAS trial treatment. I have been reluctant to have him try different drugs because he tends to react poorly. We finally found a doctor here in FL who seems like he understands my son’s conditions and he is doing his best to help him. It makes all the difference when you find a knowledgeable doctor! I’m sorry you’ve dealt with negative or uncaring people too. We’ve dealt with a lot of that too. We’ve had to really distance ourselves from people who don’t seem to care what my son is going through and judge us for how we respond to his issues. Some we have had to cut off completely. I won’t allow anyone to gaslight him about his struggles. I hope you continue to see improvements in your health and well-being as you take gentle care of yourself. 💞
Fantastic. We've been on this road with two of our kids. Never easy. I sent your first video to my 16 year old. She's struggling with the non empathetic friends. Heds is from me. I was so mild didn't know I had it. They are not a mild expression .
Hi Kait, Thanks a zillion. Your courage is amazing. You give me courage by hearing this. My liver enzymes are not good I don’t drink but the Drs look at my ggt n say it would help if you gave up drinking. Is this perhaps a common thing with Eds
Im 27 and Im seeking out some relatability because this subject is on my mind... we hung out with some friends that have a baby and theyre like oh youre never ready and dont you want this?? I honestly see having kids in the VERY distant future but rn noooo way. I have a lot of trauma just because I struggle seeing nuclear families because I didnt have that! I need to work on myself and my demons honestly. When I see kids I have zero interest, and its not that I dont like them but sure I can handle hanging out with the kids temporarily... not ready for the full time commitment. Im really happy with my fiance and cats, but my mental health still needs a lot of attention. Growing up I did not ever imagine having kid's or getting married because that was not normal for me... Im getting married now but kids needs to wait. If I can freeze my embryos in the future I would definitely consider it. Thank you for sharing your story. I also have friends with kids and I like the kids but I know I am not in that season of life. I dont want it right now to put it bluntly.
I totally relate. Don't let your friends or society dictate what you want or when to make certain life choices. You're on your own journey and you're doing a great job of prioritizing physical and mental health! A LOT of parents have never done that.
thank you for sharing this❤. Have you checked your iron and ferritin levels? I have the same symptoms as you and my ferritin was low but building it up with iron supplements has helped my pots symptoms a lot.
All of these things you are doing are bandades and not treating the root cause. I spent my entire life In the symptom management mode... Only to get much worse because of it you leave infections and vitamin deficiencies untreated for long enough While you manage symptoms you are bound to get worse later and it's a whole new ball game when you are severely disabled unable to Walk yourself to the bathroom.
