Hi, I’m Cai! I’m sick and I make videos about my life! I have a condition called Ehlers-Danlos Syndrome (an unknown subtype as I have a rare mutation in my COL1A2 gene) and I vlog my life with it! I have a degree in writing from the Savannah College of Art and Design and I now for work LLS. I have a cat named Lavender. And I use way too many exclamation marks! If you like my content, consider checking out my Instagram @cai.macler and my Etsy MadeByCai! Lots of love!
I just saw your original surgery video. I went through my last hardware removal in early March this year. Glad to see everything is going alright. I wish you all the best!
I’m 22 and I’ve been through two ulnar osteotomies (on both wrist and 4 surgeries total including plate removal) The initial surgeries were the worst, but the plate removal and recovery was nothing compared. I wish you all the best and I hope your arm is doing better. It’s definitely not easy to go through. ❤❤❤
Girl, I’m so sorry. I feel ya on the gi docs and testing and frustration and confusion and years of getting nowhere! I’m in Florida and it’s been years of a never ending nightmare. I’ve given up so many times. Waited months to either have doors shut in my face and told me go away, or they have to respect all over again. Nobody listens, looks at my old test and results. I feel I’m my own doctor at this point. I’ve been to eight and still no better and not getting help. I totally GET IT! You’re not alone. We have one another for support cause we sure are t getting it from our GI! It’s so scary sometimes!
TRULY!!! Like why is this the one side of my care that is so hard to manage?? I got really sick at the beginning of 2021, I suddenly developed a lot of heart issues, my GI track shut down, my joints all got so much worse, and loads of other things. Literally my GI care is the only thing that hasn't improved. Everything else has been managed since then? Why is GI care so hard????? And it annoys me the most because I literally just want to eat. I always hate when someone else is going through a bad thing, but it's also nice to know I'm not alone, thank you <333
Hi my name is Lilee. Im sick too. I have a dog named Betty. I use too many emojis 🤓 Im glad I saw your video. I agree with everything you said. Sometimes you need to have stuff with you. Or gadgets to make life easier. I spend most of my time in my living room so i try to make it aesthetically appealing. And yes just because you're sick doesn't mean you can't be cute too. 😁 And I like nightgowns but I don't have things I have to navigate around.
late to the party - but i was having a particularly bad pain day so i binge-watched about a million chronic illness / pain management videos on youtube and yours was by FAR the most thorough thank you so much !! there were even some things I had never even heard of like a heated brace or motion sickness patches !! thank you again ❤❤❤
Of course!!! I'm so glad it helped out!!! I definitely have been through a lot of trial and error to find things. But please let me know if you find anything else!!! I LOVE finding new things!!!!!
Thanks for sharing, very interesting that the variation you have isn’t yet well known but is affecting the COLA1 gene. It’s the one gene associated with three types of EDS so it’s definitely intriguing and very interesting to hear about. I have no idea how it’s differentiated other than the location on the gene which shows variation perhaps..🤔 I’m sorry it’s probably been a long process, and now You do know something is showing that you are experiencing what You know has been going on. I think the hardest part is knowing something is wrong but being told our symptoms don’t match our test results and we have to get the genetic test in the first place to get answers by then we are exhausted, financially depleted and perhaps even missing therapy because of not having the correct diagnosis. I’m suspecting vEDS too, so I kinda hope that my results somewhat reflect Yours. Although I found peer reviewed papers on varicose veins and Collagen 1 &3 synthesis dysregulation, also myxomatous mitral valve and I have both, the visible veins and unfortunately the gastrointestinal issues too 😑etc (pots MCAS) I really hope that the EDS world advances in the knowledge available to help You and the community get the best care possible Told I will most likely get my results back by October, praying it’s even faster, and Finland is apparently great at genetics ❤
I just watched this and I can totally relate! I went to Mayo Jax for three years. Its a three hour drive. They treated me the same way. I left feeling lost and unheard. I got no real answers or advice on what to do with the info I got from them. I just quit them and am quite upset! After three years i still struggle with no advice on how to do what they told me I ought to do. About to start over from scratch. I am complex like you. Its like...how do I do all that if I am unable to...duh! I felt exactly what you were saying. Not sure what to do next. Its just so upsetting! Hope all is well. I am a new subscriber.
I'm so sorry you've had to go through the same thing. Specialist hospitals are so frustrating when they think they have all the answers but can't help manage all your conditions at one time. It's like where else am I supposed to go???? I'm hoping both of us find better answers soon!!!
Thanks for the VLOG. Due to have my ablation in Slovakia Apr 24 (2024). Quite comprehensive. Never seen an ablation video before which showed the bruising from the catheter insertion area - useful to see what others only talked about.
I'm glad that it helped!!! I definitely felt like no one was really showing the full process of this procedure and I had so many questions when I had mine done. It was so difficult!
Glad you got this figured out. You ought to take that anger, well deserved anger, and get back to every place that failed you, and tell them. Let someone in charge really know how you feel and that they are WRONG and put you in danger! It may save someone else!
Yes!! I have definitely talked with my infusion company, they should have recognized the signs much sooner. So many of their patients have central lines. I truly hope no ever goes through what I did with no answers for that long!
I got sick after an incident happened to me in February 2022 and then was in hospital with everything inside me organ wise freaking out by end of March and still struggling 2 years and 2 months on. I hear you about time lost.
I'm so sorry all that happened to you, feeling like you've lost your time to an illness really is the hardest thing. I hope things get easier for you!!
They put something in my IV! It was just a twilight anesthesia so I was awake, but mildly sedated. A lot of people fall asleep with it, but I never have.
My issues ended up being from an infection inside my port. Every time I used it, I pushed that infection into my body and my immune system had to fight it off. It was a strain of pneumonia which is why I was having the symptoms I was having. I hope you get answers to why you're having similar issues!!
I hope you are well. From what I have been reading, there is a fairly recent development in treating the arrhythmia symptoms. Diltiazem has been shown to be just as effective without the horrific side effects. As for myself, I would never submit to.adenosine unless I received something like propofol first…. I had several episodes of super ventricular tachycardia back in the mid to late 70s. I have been wondering why they never tried to give me that back then so I just looked it up. It seems it really came somewhere around 1978, so I guess that was one of the very few lotteries that I won my life. That wasn’t in yet that often.
Interestingly enough, adenosine wasn't even FDA approved until 1989! So you definitely missed it by a while. I'll be very happy for others if they can come out of SVT episodes without adenosine, that was certainly a horrible experience. But it was effective for me. I guess I can't be too upset when I know it saved me!
Unfortunately there aren't may studies on this. For some people, their lives are incredibly short due to complication, for others, their life span isn't affected at all. It can vary dramatically based on comorbidities and complications. We've recently discovered that I have a mutation in my COL1A2 gene and I do not have hypermobile EDS unlike what we thought. My mutation is incredibly rare and there are definitely no studies about lifespan for my specific mutation.
Wow, that was very compassionate of them to give you anti-anxiety medicine AFTER giving you that drug while THEY all knew what you were going to go through. Thanks to watching videos like these. I would definitely demand propofol before I would let them give me that. Hope you’re doing well…… also very considerate of them to neglect informing you what you would feel before injecting. SOB’s
I'm sure they were just trying to treat me as soon as possible, but it definitely wasn't a great experience. Unfortunately, I had no idea what has happening or what any of the medication was. Luckily that hasn't happened again and I am doing much better!
Great video as always. Its nice to learn about your life and how you've adjusted to it with a port. Your experiences are (as always) informative and inspiring. Cant wait to see more!
I actually have all of the dates written down, but keep in mind this was just my experience and my city’s hospital system!! So I had my appointment with my primary on March 2nd, that’s when she put in the referral. They called me in a week, on March 9th and we scheduled it for March 14th. It was less than two weeks from the referral to the day of surgery! I think a lot of vascular offices are super quick with it, but my doctor did tell me that it might take two weeks for them to call me. My vascular office called me while I was in class and asked how soon I needed it scheduled. If I had needed it immediately (like for immediate cancer treatment or likewise) they could have done it the next day (Friday the 10th), but they said it would be easier to wait until Monday. I had too many classes that day, so I asked for Tuesday! I believe they called me again the day before to go over surgery instructions! I hope this helps! I didn’t realise how fast the process was going to be for me, I’m not sure if it’s that way for everyone though. Let me know if you have any other questions!!
@@caimacler Ok- that would be nice if it would be the same for me. I was started on TPN on October 5th, 2023. I have a PICC line right now. It’s already my second one bc the first stopped working. Now the picc line I have is getting super positional again and wouldn’t pull blood at my last infusion appointment. My nurse has been encouraging me to ask my doctor about a port. And at this point I am worried my current PICC isn’t going to last much longer. I can tell it’s hard to push saline and won’t pull blood most of the time when I flush it. My appointment with my PCP is this coming Tuesday. I am really nervous about asking about it. I’m not sure how long I am going to be on TPN but I’m sure it’s going to be months longer until anything can permanently be fixed. I also receive IVIG every month and will be for the rest of my life. So that would be another good reason to have one. Thank you so much for the information and your video of your experience. As I said- I really hope mine experience works out similarly and quickly. But first I’ve have to get my doctor to agree with it.. I’m not very good at advocating for myself.
@@caimacler also kinda worried about timing bc I think at my hospital they might use general surgery team for ports.. and I would assume that may extend things. However if I am having issue with my PICC then some kind of intervention will need to happen sooner rather than later bc they say you shouldn’t keep a PICC that won’t pull blood if your treatment will be for longer than a week or two.
The joint pain is definitely so bad!!! Icy hot patches can be a fav if my skin is tolerating them or creams if not. I definitely love heat, so my favourite ways to work with joint pain is heat therapy. I have a massive electric blanket I keep on my bed, I love baths when my POTs isn’t too bad, I’ve got all kinds of smaller heat pads and things like that!! I know a lot of people do better with ice, so try both and see if they help with anything!! If it’s a really bad joint pain day, I wrap it up with either braces or tape and rest it. In the long term, gentle stretching and strength building can help a lot, but only with doctor approval. I see a PT regularly and it helps a lot, I suggest looking for one who knows hypermobility or chronic pain if they don’t have hypermobility. I don’t know if any of that’s helpful, but like I said, heat is definitely my favourite thing. I’m just a little lizard lol. It just takes some trial and error to figure out what works best!
I love this video so much thank you for all the suggestions :,) I’m newly diagnosed with a chronic illness and am having a hard time adjusting to the constant lethargy and pain. This was exactly what I was looking for and I’m thankful to have come across this 💙 much love
I’m so glad I could be of some help! I’m sorry you’re going through all this, I know just how hard it can all be to start adjusting, but I promise that eventually it will all feel so much easier to manage. You’re never alone in this and feel free to reach out if you ever have any questions or anything!!!
Haha I love this! Omg we are almost identical I love how many similarities we have besides the EDS and absolutely LOVING DISNEY and cows lol! I guess it looks like I’m buying myself a walker soon! :)
Somehow I feel like EDS and Disney are a combination that are simply meant to be lol! I do love my Walker so much though, especially at places like Disney!! Truly a game changer
You're so young to have to be going through all this.. I'm older, Gastroparesis, pots And many more issues that I have.. But i'm a lot older than you.. I certainly hope that as you age, you get better. And stronger.. You certainly have a really good vibe and attitude.. One day at a time.❤❤❤❤
Awww thank you!! I try to stay as upbeat as I can! Gastroparesis and POTs really do suck and I hate that any of us have to deal with it. While getting sick young hasn’t been ideal, I’m luckily that at least my body is young and I feel like that’s made dealing with illnesses a little bit easier!
There's no way I could have the fat in both those eggs. I have to eat just the white part of the egg. As far as the rice goes, that sounds like a great idea with the eggs but I would have to do just egg, white, and rice. I'm not able to digest fat well at all and I get very, very sick, very quick When eating fat. No broccoli for me ever. And that serving is way bigger than I would ever be able to eat. The max I can eat is about two thirds of a cup..
We all definitely have different things we can tolerate and all of our diets look differently. I am definitely not a nutritionist or doctor or anything like that, and I’m just sharing what works for me! You’ll have to let me know how you modified fried rice for yourself? Can you do tofu or chicken with it for protein at all?
Holy crap! That's crazy! I thank my lucky stars I don't have any heart conditions of any kind. I do have an allergy to amoxicillin (which was diagnosed in 2020 prior to the COVID lockdown) when my doctor prescribed it for a sinus infection. Then again, I have also taken a BLS course (aka CPR/AED training) back in 2013. Best to be prepped for an emergency! That "posterior" electrode I noticed is an AED electrode in case you went into cardiac arrest and they have to resuscitate you (much like what I was trained to use in 2013). I recall how my sister had a heart murmur when she was 14, but she's long gotten over it. I often document the things I go through with my ASD (I am autistic).
