Christina, I was a bit taken aback when you said you didn't work. I think you are one of the hardest working women I know of, and sometimes under the most difficult conditions. You have these brilliant videos that you make come heck or high water, plus all your wonderful etsy creations, plus so many other things. So, you are absolutely a dynamo, and and beautiful one, at that.
Walk for POTS? LOL I guess it's for others to show their support but good point on that one. Newly diagnosed, so I'm learning. Love that there was pickles!
DITTO! and I have a friend with a super duper rare disorder (vasculitus PAN... the type is super rare, and doctors seem to be just... Yeah. They don't know what to do) but I wish she could have more community (she also has eds type 3)...totally hate the loneliness of being unable to get out and do much outside the house, and I love alone... Super glad I've got pups at least, and it's great to at least know we aren't alone! *hugs*
Apple picking is a thing in the Midwest too. So much fun!! Also, I'm so glad you are out of the hospital and back on your feet. Its great to see you enjoying life again.
I cannot tell you how many times I have punched myself in the face or the wall with my hand by trying to pull my sheets up on my bed...… It's embarrassing XD I am SOOOO happy you got to see the Frey Life!!! THAT'S AMAZING
My hipbones hurt when I sit to long and it doesn't matter if I sit on a soft couch or hard chair. Anyone tips, ideas for cushions or other things that could help? Seeing my favorite vloggers in one room is a meeting I hoped for so long to take place. Because of them I found your channel.
xirisx1988 I use a cushion from the PURPLE. You may have seen ads from that company, touting the PURPLE mattress. Don't think I'll be buying one of those mega $$$$$ items, but I'm very well pleased with the return of comfort as I sit. The cushions are much more affordable ($35.00-$90.00). Check their website for mor up to date info. Good luck 👵🏻 🤗 🌝
Mary is a good online friend of mine! I wrote a song that was featured in one of their vlogs! I'm SO happy you got to meet them. Ollie is so adorable, isn't he?!
It made me so happy and excited to see you hanging out with Mary and Jen, I’ve been hoping for you guys to meet for years now and I’m just so thankful that you got to have that fellowship together. I know how thrilled I was to meet Bonnie and to be able to have a medical mystery like me in my area!!!
"Living with EDS: What is Ehlers Danlos Syndrome?" brought me to your channel. :) I loved watching videos of you spreading awareness and fell in love with your vlogs, too! I also have EDS and a few comorbid conditions and your faith and positivity is just so contagious in the best way.
Yes I we go apple picking where I live I Oregon... When Mary popped on the screen I thought I had hit a button and changed the video I was watching.. LoL... That is amazing that you got to meet up and hang out with new friends even though you have talked with them so many times... I also love the movie "Murder on The Orient Express"..
For me apple picking was a yearly fall activity! Literally crates full of different types, and then making apple sauce and pies from all the apples that had fallen and wouldn't keep well. I live in the Netherlands though, very close to our part of the country with lots of fruit trees. Recently I haven't been going though, I don't live with my parents anymore and also can't eat apples.
Hooray for spending time with Mary and Jenn! And doing so many things you've been wanting to do. You amaze me! I have to swish and gargle my cromolyn at times. This time of year especially. My tongue and throat swells just enough to hurt and I also get sores. I hope it helps you!
I think it's so neat that you were able to connect with fellow RUclips vloggers. Along with your videos, I also watch Mary's, and I'm definitely going to check out Jen's channel. Hope you are having a great week!
I'm on my diagnosis journey. I would love to meet and get to know others who have either been where I've been or are going through it. Nevertheless, I'm crazy happy that things seem so much better for you! Thanks for giving me hope and being a light
I Love both your channels. So great that you did a collab. When i saw the thumbnail i was like "is this Olliboy?" 😂 And then I Freaked out being so excited having you together in a video. Poor Peter 😂 Being all alone with three silly crazy chicks 😂 😂 😂 Its not ment as a mean/meen? thing. Its ment in a funny crazy silly way!
So I saw your awesome photo proving EDS Awareness! I posted it on my page and wrote” My friend Christina!” Later I realized you have no clue who I am but I watch all your videos! Haha! 🌸
steroid withdrawal is brutal.. but it does get better if ur adrenal is kicking in.. takes me a few weeks.. to feel kinda normal every time i go down in dose.. but i can never get off because i have adrenal suppression. 5mgs is the lowest i can go.. and awesome u met he frey life! love it and yes its a thing, we are in montreal quebec canada and we def go apple picking!
Oh my gosh! It was so good to see you and Mary together!!! And Ollie boy! Where was Peter? Surreal to see the people you watch the most together! Does your friend have a vlog channel also? I also take chromyln sulfate orally, and I’m considering asking for the neb form also. Looks like you had a busy fun (but exhausting) week. I’m sorry it’s been so rough and it sounds like a good plan to go back to your higher steroid dose. See if after you heal your angry brain and your exhausted body a bit more if it works any better. I wore my bracelet today ! I had to take the 2.5 hour journey to see my pain specialist and received some just really extremely depressing news regarding my treatment plan, which led to many tears for the long drive home, but I loved looking down and seeing your beautiful work. I hope this week is going well for you!❤️❤️
ever since I saw the IG pics and that you were not on The Frey life ch I was hoping you vlogged some. :) y'all together are amazing. I live in western NY and yes apple picking is a thing. It's been years since I have gone we use to do it camping but have not gone camping in over 20 years. I need to go
Was so looking forward to this since I saw you at the Frey’s on Instagram! You did a ton this week. I can’t believe you went through fields of ragweed (also a nemesis of mine) and slid down a slide. Eeeeek! Good for you, and may you now get some well-deserved rest. Happy Monday!
I used to live by a farm that was called Apple Hill. We used to go apple picking. I miss it a ton. Where I am now, we have pumpkins. They just aren't worth paying the spoons for the experience here. It's just not the same. Happy fall! I've started consuming hot chocolate. My limited soft food diet allows it! Ice cream, too!
Oh honey I’m so glad you had a great week! How fun meeting up with people I’m so glad you are starting to feel more yourself again and working on getting your body back to where it should be xx
I am so glad you got to meet Mary and Oli from The Frey Life! You two live so close to one another. I live in Virginia and have Fibromyalgia, Psoriatic Arthritis, Degenerative Disc Disease, and of course Chronic Pain. If you are ever in the area for a dental appointment, I would love to meet you.
Christina, I know you're not a doctor, you've been through a lot more of this than I have. I have hEDS and have really begun to get much sicker since about 2013. I'm 44. My question I have is about the MCAS stuff you mentioned. A couple of years ago, I developed what showed up as a severe allergy to gluten and was diagnosed with Celiac Disease. Around that same time I had a severe drop in my cortisol which we chased to see if it was Addison's and it wasn't. My cortisol was 0.6 fasting early morning. So it was noted as Adrenal Fatigue. When I went in for blood testing for Celiac Disease, I had been off gluten for several weeks and had to go back on it in order to do the test. I did that and like I said, the blood test came back positive and I was diagnosed (along with an upper GI which we now know was SIBO, and still is, I'm having a lot of issues with my GI tract with severe EXTREME bloating and dysmotility, we will be checking for gasteoparesis soon), the night I had my Celiac test after going back on gluten, I developed huge blisters and sores in my mouth, on my tongue (that left scars) in my gums and insides of my cheeks and the roof of my mouth which felt like I had burned it on very hot food. It was miserable. But I hadn't been diagnosed with EDS yet (this was while we were still sitting through narcolepsy with cataplexy and adrenal fatigue and this and that and all these insane co-morbidities that literally had me asleep 18-22 hours a day and I had to close down my business I worked insanely hard to build from the ground up and suddenly I was disabled and in my bed all the time)! I had been misdiagnosed with a positive blood test for juvenile Rheumatoid Arthritis which made sense with my pain and Fibromyalgia same thing. Oh, and the narcolepsy which had periodic limb movement disorder, REM behavior disorder, and the interesting part that leads me back (now that we know) to EDS is I was diagnosed in all 4 of my sleep studies with "Hypertonia" which is not seen without a serious reason such as brain injury, cerebral palsy, stroke, things that cause your muscles to stay contracted even while in sleep paralysis. That's where they got stumped. Well now knowing I have EDS, and that my poor muscles are constantly grabbing at me trying to hold my joints together even when I sleep, it finally makes sense. Sorry for the long comment/question! This thing that happened to my mouth such as what you were explaining about your mouth sores from MCAS has happened to me before in 2006. I had NO IDEA what it was and neither did anyone else. But it was the exact same thing as what happened when I went back on gluten for the test. That steered me away from gluten for 2 years and now I have zero problems with tolerating it. This is literally the most confusing condition ever. I had shingles at 36 and right after that my right hand was suddenly paralyzed completely when I woke up one morning and stayed that way for over a month. I don't have allergies. I have a very intense sense of smell that drives me insane but doesn't cause me any problems with histamine or anything, I don't get cold symptoms (when I was an adolescent and all through my teenage years I had constant severe sinus infections, I don't anymore), in fact I rarely get sick (in the normal everyday sense of sick, cold/flu stuff, just severe and constant fatigue). Oh I was going to tell you that my mom takes Xolair. (I was adopted so it's not hereditary, but I did tell her about MCAS and antihistamine and about you and to ask her doctors about it. She has a really hard time breathing and is stuffy and sneezing and awful a the time. She's 73 so I worry). Again, I'm sorry for this long post, but when you mentioned the mouth sores, I have had them too and don't know what they were from either time! Is that an MCAS reaction or something? How can I figure out what causes that? I better get to bed.... neck injections in the morning. Unfortunately even at the age of 44 and I'm still a 9 on the Beighton Scale, I have certain muscles that are clamped down so hard in my SI joints and that area, and my neck and upper spinal muscles between my shoulder blades. It's unrelenting. I e just begun injections. Sadly the first round only lasted 2 weeks. Thank you for posting so much. I learn a ton from you, even though I have a different type of EDS, you still help me a lot. I still feel new to this even though I have been suffering for 40+ years! Your positive outlook and constant smile are so beautiful and show us that we are zebra warriors! You are an inspiration to me and so so many! Thank you. Take care, Six
Six Mercer Sorry, I'm not Christina, and I don't know about the mouth sores issue, but a lot of what you are describing sounds quite a bit like symptoms that Chronically Jaquie has and I thought maybe you could benefit by checking out her channel if you haven't already. She also gets extreme bloating and they recently figured out it was connected to her mast cell flares. She also has gastroparesis and was having an awful time with it and then was able to start medical marijuana oil and that helped tremendously, along with some other things, I can't remember it all right now but it's in her vlogs. She also has several other conditions and is very organized with linking topics in the descriptions for looking up stuff. Of course she's not giving medical advice, just her experiences and maybe they will help others to discuss things with their doctors. I hope you can maybe get some insights there, here, and from your doctors. Btw, my daughter has celiac disease too. She's recently had a severe case of hives and angioedema and we're not sure what caused it, she's never had anything like that before, except a minor case of hives several years ago. It's been several weeks now, she has a short term steroid and several other medications and it's under suppression now but still there. We think it may have been the frontline treatment put on her dog for the first time a few days before it started, but could be from the celiac possibly. Anyway, I hope you get some answers soon and nice meeting you in the comments. :)
Omg! Christina and the Frey Life. I watch that all the time. Did you see sweet Ollie? Oh wow what a day. So FANTASTIC for all 3 of you to meet. That pie oh boy!! Looks 😋. I hope you feel better. The steroids get easier for you.💛💞
I LOVE apple picking! I miss it. Apple season comes in summer in Manitoba. I've always wondered if families in cali or florida go orange picking at Christmas.
Hey Christina! Watching your videos has given me so much hope since finding your wonderful channel. I’m about to start getting tested for HEDS, POTS and MCAS and I’m getting very nervous and it’s kind of scary.. Do you have any suggestions on how to cope with everything at the beginning of the journey? Thank you so much for being such a joy to learn from and watch. I hope you’re feeling well!
I live in the United States and we go Apple picking every year. I also make gluten free, dairy free apple pie and it is my absolute favorite fall treat in the fall
There is a box on cratejoy. Its the hopebox. Has a candle in it....your mouth will water. Smells like apple to the point of you want to eat it. Swear to it!!!! Love and respect-Becky
We do apple picking in Canada. I know how you feel. I did go to college but didn't complete. I have chronic illness also. I have small intestinal obstruction, hypothyroidism, IBS, Fibromyalgia, I had cancer twice( leukemia and thyroid cancer), diabetes, chronic fatigue. I did learn to drive younger but with the medicine I take I can't drive. I have never really work either in my life.
I love going apple picking! It’s also a Canadian thing 🍁 I’ve been so busy I didn’t get to go this year and the season here in Quebec is pretty much over ☹️
I live in Cambridge and I'd love to go to a meet up! I was so sad that I couldn't make it to the POTS Boston walk since Saturdays are always bad for me. Looked like a blast!
I have severe allergies my throat gets itchy skin eyes and rash. I hate it. You are so chirpy I love watching you. When I sit too long my joints stiff. I had the flu for a week. How have you been?
I take the cromolyn as well and I think it taste nasty the more water you add to it the worse The Taste is so that little bit of water that you used was definitely the right amount cuz if you use more than that it tastes absolutely horrible
I wish they have apple picking here in South Florida. It's way to hot for apples to grow. If I do visit Massachusetts in the fall, I would definitely pick apples.
I'd love to hear how the gluten free apple pie is made. My husband has to eat gluten free and I've always struggled with pastry! Lovely vlog as always 😊😊 Your positivity and the way you live with your illness really helps me ❤
I just went to the Apple orchards this past weekend in Southern California! We love it. Got some Jonagold, Hoover, and Spartan Apples! The best. Hands down. And they'll give me my favorite kind and set it aside for next year if I call ahead and place my order. Its so nice. And we did pick a few. It was nice but the allergies were getting to me and the hills. My sister may need a shunt...she has a Syrinx in her spine and her nerve pain is going crazy. I need to get her one of those butt cushions. I hope you linked it in the comments. And it's so great that you got to hang out with friends. Once I am able to get to meeting and to friends to talk about even an online local support group (the closest one is 2.5 hours away...) I'm definitely going to start one when I am more stable. I am starting an injectable for my allergic asthma! Not Xolair but it's one like it. My doc doesn't think Xolair will help me enough and he did a lot of research to pick one and once I get over this cold I get to try it! I take the cromolyn sodium PO and it helps my oral and throat and to the reactions my mouth is the first thing that starts burning and getting sores with my reactions usually. So I am glad it helps. And I hope your brand doesn't taste bad! I can't even taste mine anymore. I love the smell of Apples it does smell like fall. I just posted some pics from the orchard on Instagram we got the best parking everywhere it was so great. And I got to spend time with one of my favorite people who shares some similar medical stuff too. It's nice when people understand. Hey Lauren and mom And teyla and dad and your pupper (= hope this week is treating you okay! Love from California!
We haven't talked much but I think of you and refer to you as my friend, hope that's not strange lol. So happy to see you with Mary and the gang (minus Peter?) but yeah lovely!
Totally get the allergies... So sorry... My entire mouth and throat itches form them but for sure no sores. Yes, if the hormones are weird or different then yes there will be fluctuations in laxity. I know for me not taking what you take at all but just the normal fluctuation through the month on the days I ovulate and on the days of my period my muscles and tendons are more loose and on the other weeks they are better but still hyper mobile. But yes hormones do so much to us EDS folks... Lol the no touchy shirt on a PT day! Ooo no so sorry your body is having a rough time. Just remember you are sill trying to recover too from all of those surgeries. Your little body needs more time- awe so sorry. Hip hip hooray ! Jen is awesome and so is Marry! Three of my favorite vloggers all in one place!!! So glad all three of you could be together!!! So exciting! It is tough finding people who have similar experiences and getting to be with them or meet up with them that really know you. So glad you got to have some well needed hang time without surgery or appointments! Yes the murder on the orient express was really good! I get you on the Potts walk but if one has Potts it's actually good. My PT says it's one of the better things to do! It sounds weird but it's true. Lol ragweed - ick ick ick. I would be sneezing up a storm walking past it! Yes face to face fellowship is so much needed! As always a great week of vlogging- gentle hugs my friend!
Wow! So cool you got to visit The Frey Life! (Mary, Peter, & Ollie) and so many other friends! Maybe you and Mary could do a 'creative colab' sometime where you do arts & crafts together, that would be fun! I know you're busy though, but in case you ever get the chance, I just thought I'd put the idea out there. I think I've been apple picking once in my life when my daughter was about 2 (she's 21 now, ) in Connecticut when visiting family. They let us eat some while we picked and that was fun trying the different kinds. I'd love to go again some time. We also picked blueberries in CT. Here in NC we mostly just pick strawberries, but there are some community gardens where you can help and get all sorts of stuff like lettuce, peppers, tomatoes, etc. When I was a kid we got stationed on Clark AFB for 3 years in the Philippines and they give you a pineapple plant when you get there to put in your yard and it takes 3 years to produce one pineapple, so the time you can pick it, it's time to go back to the states, so you have a little pineapple farewell picking. That was probably the most unique thing I ever picked. 😆🍍🇺🇸
We live 10 min from the biggest apple orchard in Ontario, Canada. We love apple picking, apple pie, apple sauce, apple butter, candy apples and apple turnovers ....the list goes on and on!
I don't think I'm too much older on my end (29) but I can honestly say that having some more of the life experiences with the medical issues like college, driving and working still doesn't make it any easier to relate to normal people at all. I made it through high school mostly ok up until the end when I was diagnosed with the solar urticaria and then non specific autoimmune disease (which they still can't figure out if it's lupus, EDS or both at this point). That being said compared to all my old friends I had when I was mostly ok, I got a later start on everything, I didn't start driving till I was 21, and then I got my first job around 22 and started going to the local community college. The only thing getting the late start helped with is knowing more of what I wanted to do, even though the plans haven't really turned out how I wanted, but trying to relate to the mostly younger age range there (though there are some older people in most classes) it just never really worked. I don't feel bad being isolated and I actually somewhat prefer the online connection with people who understand my struggles more than trying to connect with people in person who just don't get it. I'm actually having that problem a little bit now with my instructor at the hospital, because he thinks I'm no fun and not social enough because I literally prefer just going to work, going to the class there and then just GOING HOME TO RELAX! Which in his opinion makes me "no fun" and "I'm too young to be like that". Then the never ending "Why do you still live with your parents if you work?" thing that hardly anyone can understand unless they are in the same shoes. At least some independence can happen, just in increments. It's a really fine line, but I feel that because we matured in a different way because life didn't give us the option, that we at least gained other positives and that's appreciating the smaller things in life, and really truly appreciating the friends that stick by you, even if they are ones you've never met in person.
Apple picking is definitely a thing in the Midwest! I don't think it's everywhere through--a bunch of my friends in grad school who are from other parts of the country have never been!
Apple picking - Living Rosa channel went apple picking just a week or so ago, and they live on Long Island. And I live in New Jersey and there’s apple picking in northeastern area of the state. I was so delighted to see you meet up with Mary Frey - I follow her all the time, just like I do you.
I have allergy too and live near boston and that all summer was terrible for me- I was like all time sick but it was allergy, then i tried benedryl and it stopped alergy but it has a side effect for me like stomach get bloated and i had to stop it after some time, and now I have less allergy but my stomach acting weird
Do you watch Chronically Jaquie? Her stomach gets bloated too and they think it's related to her mast cell activation syndrome, just wondering if you have that too. She also takes benedryl during flare ups but I haven't heard her connect the benedryl with the bloating so that is also an interesting connection. My daughter has a hives and angioedema flare up for the past several weeks but benedryl didn't help her too much. She did short term steroids and they went away for a few days but came back as soon as she got off them. Zyrtec and Zantac twice a day and Singulair has helped it stay mostly under control. We're not quite sure what she's allergic too, maybe the Frontline put on her dog, or maybe related to her Celiac disease but not really sure. I'm glad you're doing somewhat better. I hope you get to the bottom of your stomach issue.
Christina, I was a bit taken aback when you said you didn't work. I think you are one of the hardest working women I know of, and sometimes under the most difficult conditions. You have these brilliant videos that you make come heck or high water, plus all your wonderful etsy creations, plus so many other things. So, you are absolutely a dynamo, and and beautiful one, at that.
Definitely agree!
So true!
Yes! These are both very real, involved jobs! You absolutely work!
👍
absolutely agree!!!
“I dislocated my finger trying to pull up my sheets, and then I punched myself in the face”
I DIED! That is so relatable.
Holy moly!!! Christina and the Frey life!!! You guys are awesome!!!! You guys made my day!!!❤️❤️❤️
Kelly Myers right!!!! ❤️
👍
Yesss, I'm so glad we finally got to meet!
Was literally in tears when I saw you with Mary and Ollie!!!! I’m so happy you two met! 😍😍
DITTO! I don't typically get all that giddy over stuff like that, but I TOTALLY geeked out! Hehehe! :-D
I LOVE THAT YOU AND MARY GOT TO MEET!!! Love you two 😘
Walk for POTS? LOL I guess it's for others to show their support but good point on that one. Newly diagnosed, so I'm learning. Love that there was pickles!
They had goodie bags with pickle juice shots in the little bottles like “5 hour energy” 😉
Heh. As a Pots wheelchair user, a POTS walk sound alike a hilarious idea.
OMG a cameo with Mary and Ollie!! ❤❤❤
OMG!!! The Frey Life!!! So happy to see you all meet. Awe!
How cool is that! Hanging out with Mary Frey and Jen.
It was so surreal seeing you in Mary’s house . I watch the Frey life everyday and admire both you and Mary . You are genuinely lovely people 🤗😘
Nice! Glad to see you and Mary are friends. I watch you both! Very nice people.
MY TWO FAVORITE PEOPLE IN THE ENTIRE WORLD HAD A COLLAB. I AM SO FREAKING HAPPY IM CRYING HAPPY TEARS!! THIS IS THE BEST VIDEO IVE EVER SEEN.
I’m so glad you got to meet Mary & Jen! I would love to hang out with others with chronic illness. Your channel and Mary’s is the next best thing!
DITTO! and I have a friend with a super duper rare disorder (vasculitus PAN... the type is super rare, and doctors seem to be just... Yeah. They don't know what to do) but I wish she could have more community (she also has eds type 3)...totally hate the loneliness of being unable to get out and do much outside the house, and I love alone... Super glad I've got pups at least, and it's great to at least know we aren't alone!
*hugs*
2 of my fav people!! Mary and Christina in one room. Need to get to know Jen now.
Apple picking is a thing in the Midwest too. So much fun!!
Also, I'm so glad you are out of the hospital and back on your feet. Its great to see you enjoying life again.
I just got bumped down from twice a week PT to once a week PT getting stronger!
You met Mary from the Frey life - yeah ❤️❤️❤️❤️❤️❤️
👍
I cannot tell you how many times I have punched myself in the face or the wall with my hand by trying to pull my sheets up on my bed...… It's embarrassing XD I am SOOOO happy you got to see the Frey Life!!! THAT'S AMAZING
My hipbones hurt when I sit to long and it doesn't matter if I sit on a soft couch or hard chair. Anyone tips, ideas for cushions or other things that could help?
Seeing my favorite vloggers in one room is a meeting I hoped for so long to take place. Because of them I found your channel.
xirisx1988 I use a cushion from the PURPLE. You may have seen ads from that company, touting the PURPLE mattress. Don't think I'll be buying one of those mega $$$$$ items, but I'm very well pleased with the return of comfort as I sit. The cushions are much more affordable ($35.00-$90.00). Check their website for mor up to date info. Good luck 👵🏻 🤗 🌝
Try different cushions...i found a moulded cushion helped me
Mary is a good online friend of mine! I wrote a song that was featured in one of their vlogs! I'm SO happy you got to meet them. Ollie is so adorable, isn't he?!
I loved the song you wrote! It was beautiful :) It was awesome that they featured it in the vlog.
It made me so happy and excited to see you hanging out with Mary and Jen, I’ve been hoping for you guys to meet for years now and I’m just so thankful that you got to have that fellowship together. I know how thrilled I was to meet Bonnie and to be able to have a medical mystery like me in my area!!!
So call to see the Frey life in another person's vlog. So nice you have all met and made friends. That's super nice.
"Living with EDS: What is Ehlers Danlos Syndrome?" brought me to your channel. :) I loved watching videos of you spreading awareness and fell in love with your vlogs, too! I also have EDS and a few comorbid conditions and your faith and positivity is just so contagious in the best way.
Yes I we go apple picking where I live I Oregon... When Mary popped on the screen I thought I had hit a button and changed the video I was watching.. LoL... That is amazing that you got to meet up and hang out with new friends even though you have talked with them so many times... I also love the movie "Murder on The Orient Express"..
I am glad you were able to get together with Mary and Jen you have so much in common. I am from Maryland and we picked apples
So cool that you got to visit with The Frey Life! Watch both you guys all the time!
For me apple picking was a yearly fall activity! Literally crates full of different types, and then making apple sauce and pies from all the apples that had fallen and wouldn't keep well. I live in the Netherlands though, very close to our part of the country with lots of fruit trees. Recently I haven't been going though, I don't live with my parents anymore and also can't eat apples.
Hooray for spending time with Mary and Jenn! And doing so many things you've been wanting to do. You amaze me!
I have to swish and gargle my cromolyn at times. This time of year especially. My tongue and throat swells just enough to hurt and I also get sores. I hope it helps you!
I think it's so neat that you were able to connect with fellow RUclips vloggers. Along with your videos, I also watch Mary's, and I'm definitely going to check out Jen's channel. Hope you are having a great week!
I'm on my diagnosis journey. I would love to meet and get to know others who have either been where I've been or are going through it. Nevertheless, I'm crazy happy that things seem so much better for you! Thanks for giving me hope and being a light
I Love both your channels. So great that you did a collab.
When i saw the thumbnail i was like "is this Olliboy?" 😂
And then I Freaked out being so excited having you together in a video.
Poor Peter 😂
Being all alone with three silly crazy chicks 😂 😂 😂
Its not ment as a mean/meen? thing. Its ment in a funny crazy silly way!
Oh my goodness! my favorite bloggers together! You both are just so each to love! Medical nerds unite!
Christina, Mary, friend Jen & olly. ;). Hope y'all had a fun evening! Going to check out Jen's channel
So I saw your awesome photo proving EDS Awareness! I posted it on my page and wrote” My friend Christina!” Later I realized you have no clue who I am but I watch all your videos! Haha! 🌸
steroid withdrawal is brutal.. but it does get better if ur adrenal is kicking in.. takes me a few weeks.. to feel kinda normal every time i go down in dose.. but i can never get off because i have adrenal suppression. 5mgs is the lowest i can go.. and awesome u met he frey life! love it and yes its a thing, we are in montreal quebec canada and we def go apple picking!
We are in upstate New York and we go apple picking with my kids and now with the grandkids. It’s a good memory for all of us.
Oh my gosh! It was so good to see you and Mary together!!! And Ollie boy! Where was Peter? Surreal to see the people you watch the most together! Does your friend have a vlog channel also? I also take chromyln sulfate orally, and I’m considering asking for the neb form also. Looks like you had a busy fun (but exhausting) week. I’m sorry it’s been so rough and it sounds like a good plan to go back to your higher steroid dose. See if after you heal your angry brain and your exhausted body a bit more if it works any better. I wore my bracelet today ! I had to take the 2.5 hour journey to see my pain specialist and received some just really extremely depressing news regarding my treatment plan, which led to many tears for the long drive home, but I loved looking down and seeing your beautiful work. I hope this week is going well for you!❤️❤️
ever since I saw the IG pics and that you were not on The Frey life ch I was hoping you vlogged some. :) y'all together are amazing. I live in western NY and yes apple picking is a thing. It's been years since I have gone we use to do it camping but have not gone camping in over 20 years. I need to go
Omg this is so cool. I watch u all. So glad to see u all together.
Was so looking forward to this since I saw you at the Frey’s on Instagram! You did a ton this week. I can’t believe you went through fields of ragweed (also a nemesis of mine) and slid down a slide. Eeeeek! Good for you, and may you now get some well-deserved rest. Happy Monday!
Omg!! I just about crapped myself thinking I'd gone on to a different video, nope! Just Christina sitting in the Freys livingroom!!
SO so cool that you got to meet Mary and Ollie! I follow them, too. Love love love Ollie❤️ It’s so good to see you having such a great week. Love ya!
I used to live by a farm that was called Apple Hill. We used to go apple picking. I miss it a ton. Where I am now, we have pumpkins. They just aren't worth paying the spoons for the experience here. It's just not the same.
Happy fall! I've started consuming hot chocolate. My limited soft food diet allows it! Ice cream, too!
I'm in michigan and we do the apple picking/pumpkin patch thing in the fall. It's honestly my favorite💚
Michigander here too! Love the cider mills :)
I grew up in Wisconsin and we did apple picking every year as a kid, pumpkin and berry picking too sometimes.
Oh honey I’m so glad you had a great week! How fun meeting up with people I’m so glad you are starting to feel more yourself again and working on getting your body back to where it should be xx
I THOUGHT that was Oliver in the thumbnail! Yay! We definitely have apple picking here in England.
I am so glad you got to meet Mary and Oli from The Frey Life! You two live so close to one another. I live in Virginia and have Fibromyalgia, Psoriatic Arthritis, Degenerative Disc Disease, and of course Chronic Pain. If you are ever in the area for a dental appointment, I would love to meet you.
What a nice wedding anniversary treat, Christina! Thank you for posting today! xxxxxxxx
Omg...I know Mary and Jenny😂Love them😍it's so cool, that you hang out with eachother😋
Christina,
I know you're not a doctor, you've been through a lot more of this than I have. I have hEDS and have really begun to get much sicker since about 2013. I'm 44.
My question I have is about the MCAS stuff you mentioned. A couple of years ago, I developed what showed up as a severe allergy to gluten and was diagnosed with Celiac Disease. Around that same time I had a severe drop in my cortisol which we chased to see if it was Addison's and it wasn't. My cortisol was 0.6 fasting early morning. So it was noted as Adrenal Fatigue.
When I went in for blood testing for Celiac Disease, I had been off gluten for several weeks and had to go back on it in order to do the test. I did that and like I said, the blood test came back positive and I was diagnosed (along with an upper GI which we now know was SIBO, and still is, I'm having a lot of issues with my GI tract with severe EXTREME bloating and dysmotility, we will be checking for gasteoparesis soon), the night I had my Celiac test after going back on gluten, I developed huge blisters and sores in my mouth, on my tongue (that left scars) in my gums and insides of my cheeks and the roof of my mouth which felt like I had burned it on very hot food. It was miserable. But I hadn't been diagnosed with EDS yet (this was while we were still sitting through narcolepsy with cataplexy and adrenal fatigue and this and that and all these insane co-morbidities that literally had me asleep 18-22 hours a day and I had to close down my business I worked insanely hard to build from the ground up and suddenly I was disabled and in my bed all the time)!
I had been misdiagnosed with a positive blood test for juvenile Rheumatoid Arthritis which made sense with my pain and Fibromyalgia same thing. Oh, and the narcolepsy which had periodic limb movement disorder, REM behavior disorder, and the interesting part that leads me back (now that we know) to EDS is I was diagnosed in all 4 of my sleep studies with "Hypertonia" which is not seen without a serious reason such as brain injury, cerebral palsy, stroke, things that cause your muscles to stay contracted even while in sleep paralysis. That's where they got stumped. Well now knowing I have EDS, and that my poor muscles are constantly grabbing at me trying to hold my joints together even when I sleep, it finally makes sense.
Sorry for the long comment/question! This thing that happened to my mouth such as what you were explaining about your mouth sores from MCAS has happened to me before in 2006. I had NO IDEA what it was and neither did anyone else. But it was the exact same thing as what happened when I went back on gluten for the test. That steered me away from gluten for 2 years and now I have zero problems with tolerating it. This is literally the most confusing condition ever.
I had shingles at 36 and right after that my right hand was suddenly paralyzed completely when I woke up one morning and stayed that way for over a month.
I don't have allergies. I have a very intense sense of smell that drives me insane but doesn't cause me any problems with histamine or anything, I don't get cold symptoms (when I was an adolescent and all through my teenage years I had constant severe sinus infections, I don't anymore), in fact I rarely get sick (in the normal everyday sense of sick, cold/flu stuff, just severe and constant fatigue). Oh I was going to tell you that my mom takes Xolair. (I was adopted so it's not hereditary, but I did tell her about MCAS and antihistamine and about you and to ask her doctors about it. She has a really hard time breathing and is stuffy and sneezing and awful a the time. She's 73 so I worry).
Again, I'm sorry for this long post, but when you mentioned the mouth sores, I have had them too and don't know what they were from either time! Is that an MCAS reaction or something? How can I figure out what causes that?
I better get to bed.... neck injections in the morning. Unfortunately even at the age of 44 and I'm still a 9 on the Beighton Scale, I have certain muscles that are clamped down so hard in my SI joints and that area, and my neck and upper spinal muscles between my shoulder blades. It's unrelenting. I e just begun injections. Sadly the first round only lasted 2 weeks.
Thank you for posting so much. I learn a ton from you, even though I have a different type of EDS, you still help me a lot. I still feel new to this even though I have been suffering for 40+ years! Your positive outlook and constant smile are so beautiful and show us that we are zebra warriors! You are an inspiration to me and so so many! Thank you. Take care,
Six
Six Mercer Sorry, I'm not Christina, and I don't know about the mouth sores issue, but a lot of what you are describing sounds quite a bit like symptoms that Chronically Jaquie has and I thought maybe you could benefit by checking out her channel if you haven't already. She also gets extreme bloating and they recently figured out it was connected to her mast cell flares. She also has gastroparesis and was having an awful time with it and then was able to start medical marijuana oil and that helped tremendously, along with some other things, I can't remember it all right now but it's in her vlogs. She also has several other conditions and is very organized with linking topics in the descriptions for looking up stuff. Of course she's not giving medical advice, just her experiences and maybe they will help others to discuss things with their doctors. I hope you can maybe get some insights there, here, and from your doctors.
Btw, my daughter has celiac disease too. She's recently had a severe case of hives and angioedema and we're not sure what caused it, she's never had anything like that before, except a minor case of hives several years ago. It's been several weeks now, she has a short term steroid and several other medications and it's under suppression now but still there. We think it may have been the frontline treatment put on her dog for the first time a few days before it started, but could be from the celiac possibly.
Anyway, I hope you get some answers soon and nice meeting you in the comments. :)
Omg! Christina and the Frey Life. I watch that all the time. Did you see sweet Ollie? Oh wow what a day. So FANTASTIC for all 3 of you to meet. That pie oh boy!! Looks 😋. I hope you feel better. The steroids get easier for you.💛💞
Love your channel! It's really difficult to meet friends when you have a chronic illness. I'm happy that I found this community.
I LOVE apple picking! I miss it. Apple season comes in summer in Manitoba. I've always wondered if families in cali or florida go orange picking at Christmas.
Hey Christina! Watching your videos has given me so much hope since finding your wonderful channel.
I’m about to start getting tested for HEDS, POTS and MCAS and I’m getting very nervous and it’s kind of scary.. Do you have any suggestions on how to cope with everything at the beginning of the journey?
Thank you so much for being such a joy to learn from and watch. I hope you’re feeling well!
Honestly you inspire me so much in everything you do.
I was just wondering what type of camera you use to vlog?
I live in Washington state and we 100% go apple picking. We also have cider pressings which are my favorite thing!
I’m so jelly you got to meet Mary and Ollie! The Frey life is amazing!
I live in the United States and we go Apple picking every year. I also make gluten free, dairy free apple pie and it is my absolute favorite fall treat in the fall
Yay! You made it through the walk🤗. When you flashed on the ragweed, my heart dropped to my stomach. I'm terribly allergic to that horrible weed🤧.
Oh I have that black cushion for my crafting chair , without it my back gets crazy painful 😖!
You are looking so healthy and happy! Yay!
Doing the angry adrenal dance myself 😑 I'm new to it so it scares me. It's causing my Lupus and EDS to flare 😑
There is a box on cratejoy. Its the hopebox. Has a candle in it....your mouth will water. Smells like apple to the point of you want to eat it. Swear to it!!!!
Love and respect-Becky
It seems like a pots walk would be a bad idea.... I know it would be for me
We do apple picking in Canada. I know how you feel. I did go to college but didn't complete. I have chronic illness also. I have small intestinal obstruction, hypothyroidism, IBS, Fibromyalgia, I had cancer twice( leukemia and thyroid cancer), diabetes, chronic fatigue. I did learn to drive younger but with the medicine I take I can't drive. I have never really work either in my life.
You know your body better than anyone. I hope you figure it out and adjust things accordingly! Bless you!
I heard 'Hello Lovely People' and thought of Jessica
Yes!!!
Yay!!
Apple, Pears, Blackberries in Oregon. In Alaska it was Blueberries.. mostly.
I love going apple picking! It’s also a Canadian thing 🍁 I’ve been so busy I didn’t get to go this year and the season here in Quebec is pretty much over ☹️
I live in Cambridge and I'd love to go to a meet up! I was so sad that I couldn't make it to the POTS Boston walk since Saturdays are always bad for me. Looked like a blast!
Wow, that apple pie looks amazing! We go apple picking in the fall, I live in Wisconsin. =)
That is so awesome you vloggers got to meet.
Thanks for sharing about the seat cushion! I just ordered it and my butt, hip, leg, etc. are counting the hours!
I have severe allergies my throat gets itchy skin eyes and rash. I hate it. You are so chirpy I love watching you. When I sit too long my joints stiff. I had the flu for a week. How have you been?
I take the cromolyn as well and I think it taste nasty the more water you add to it the worse The Taste is so that little bit of water that you used was definitely the right amount cuz if you use more than that it tastes absolutely horrible
I wish they have apple picking here in South Florida. It's way to hot for apples to grow. If I do visit Massachusetts in the fall, I would definitely pick apples.
My family does apple picking and then make our own apple juice or apple cider. So yummy!
I'd love to hear how the gluten free apple pie is made. My husband has to eat gluten free and I've always struggled with pastry!
Lovely vlog as always 😊😊 Your positivity and the way you live with your illness really helps me ❤
I couldn’t wait for this vlog!!
I just went to the Apple orchards this past weekend in Southern California! We love it. Got some Jonagold, Hoover, and Spartan Apples! The best. Hands down. And they'll give me my favorite kind and set it aside for next year if I call ahead and place my order. Its so nice. And we did pick a few. It was nice but the allergies were getting to me and the hills. My sister may need a shunt...she has a Syrinx in her spine and her nerve pain is going crazy. I need to get her one of those butt cushions. I hope you linked it in the comments. And it's so great that you got to hang out with friends. Once I am able to get to meeting and to friends to talk about even an online local support group (the closest one is 2.5 hours away...) I'm definitely going to start one when I am more stable. I am starting an injectable for my allergic asthma! Not Xolair but it's one like it. My doc doesn't think Xolair will help me enough and he did a lot of research to pick one and once I get over this cold I get to try it! I take the cromolyn sodium PO and it helps my oral and throat and to the reactions my mouth is the first thing that starts burning and getting sores with my reactions usually. So I am glad it helps. And I hope your brand doesn't taste bad! I can't even taste mine anymore. I love the smell of Apples it does smell like fall. I just posted some pics from the orchard on Instagram we got the best parking everywhere it was so great. And I got to spend time with one of my favorite people who shares some similar medical stuff too. It's nice when people understand. Hey Lauren and mom And teyla and dad and your pupper (= hope this week is treating you okay! Love from California!
Omgosh!!!! I am so jealous lol. I want to meet you both!!! You are both heroes to me!!!❤️
Christina and Mary!!!
We haven't talked much but I think of you and refer to you as my friend, hope that's not strange lol. So happy to see you with Mary and the gang (minus Peter?) but yeah lovely!
Totally get the allergies... So sorry... My entire mouth and throat itches form them but for sure no sores. Yes, if the hormones are weird or different then yes there will be fluctuations in laxity. I know for me not taking what you take at all but just the normal fluctuation through the month on the days I ovulate and on the days of my period my muscles and tendons are more loose and on the other weeks they are better but still hyper mobile. But yes hormones do so much to us EDS folks... Lol the no touchy shirt on a PT day! Ooo no so sorry your body is having a rough time. Just remember you are sill trying to recover too from all of those surgeries. Your little body needs more time- awe so sorry. Hip hip hooray ! Jen is awesome and so is Marry! Three of my favorite vloggers all in one place!!! So glad all three of you could be together!!! So exciting! It is tough finding people who have similar experiences and getting to be with them or meet up with them that really know you. So glad you got to have some well needed hang time without surgery or appointments! Yes the murder on the orient express was really good! I get you on the Potts walk but if one has Potts it's actually good. My PT says it's one of the better things to do! It sounds weird but it's true. Lol ragweed - ick ick ick. I would be sneezing up a storm walking past it! Yes face to face fellowship is so much needed! As always a great week of vlogging- gentle hugs my friend!
My mom has an apple tree in her yard and so do some neighbors. We pick apples every year!
I did go when I lived in CT and a handful of times while living in NYC.
Wow! So cool you got to visit The Frey Life! (Mary, Peter, & Ollie) and so many other friends! Maybe you and Mary could do a 'creative colab' sometime where you do arts & crafts together, that would be fun! I know you're busy though, but in case you ever get the chance, I just thought I'd put the idea out there.
I think I've been apple picking once in my life when my daughter was about 2 (she's 21 now, ) in Connecticut when visiting family. They let us eat some while we picked and that was fun trying the different kinds. I'd love to go again some time. We also picked blueberries in CT. Here in NC we mostly just pick strawberries, but there are some community gardens where you can help and get all sorts of stuff like lettuce, peppers, tomatoes, etc.
When I was a kid we got stationed on Clark AFB for 3 years in the Philippines and they give you a pineapple plant when you get there to put in your yard and it takes 3 years to produce one pineapple, so the time you can pick it, it's time to go back to the states, so you have a little pineapple farewell picking. That was probably the most unique thing I ever picked. 😆🍍🇺🇸
PS I have colitis now so not really supposed to eat raw fruits and vegetables but once in awhile I do but I still like picking stuff anyway. 😃
We live 10 min from the biggest apple orchard in Ontario, Canada. We love apple picking, apple pie, apple sauce, apple butter, candy apples and apple turnovers ....the list goes on and on!
Bev Bailie ALL OF THE APPLES!!!!!! 🍎 🍏
I don't think I'm too much older on my end (29) but I can honestly say that having some more of the life experiences with the medical issues like college, driving and working still doesn't make it any easier to relate to normal people at all. I made it through high school mostly ok up until the end when I was diagnosed with the solar urticaria and then non specific autoimmune disease (which they still can't figure out if it's lupus, EDS or both at this point). That being said compared to all my old friends I had when I was mostly ok, I got a later start on everything, I didn't start driving till I was 21, and then I got my first job around 22 and started going to the local community college. The only thing getting the late start helped with is knowing more of what I wanted to do, even though the plans haven't really turned out how I wanted, but trying to relate to the mostly younger age range there (though there are some older people in most classes) it just never really worked. I don't feel bad being isolated and I actually somewhat prefer the online connection with people who understand my struggles more than trying to connect with people in person who just don't get it.
I'm actually having that problem a little bit now with my instructor at the hospital, because he thinks I'm no fun and not social enough because I literally prefer just going to work, going to the class there and then just GOING HOME TO RELAX! Which in his opinion makes me "no fun" and "I'm too young to be like that". Then the never ending "Why do you still live with your parents if you work?" thing that hardly anyone can understand unless they are in the same shoes. At least some independence can happen, just in increments.
It's a really fine line, but I feel that because we matured in a different way because life didn't give us the option, that we at least gained other positives and that's appreciating the smaller things in life, and really truly appreciating the friends that stick by you, even if they are ones you've never met in person.
Apple picking is definitely a thing in the Midwest! I don't think it's everywhere through--a bunch of my friends in grad school who are from other parts of the country have never been!
what type of eds do you have if it is not to personal?
Hypermobility type i am pretty sure she said in past!
I wish we had apple picking where I live. We have strawberry picking though.
Eugenio Move to Wisconsin! We have both apple picking AND strawberry picking! Actually, my next door neighbor is a strawberry farm.
There's apple picking in Michigan! You're more likely to go cherry picking, but picking apples is still a blast!
Apple picking is super big in Minnesota! we grow a lot of apples
Apple picking - Living Rosa channel went apple picking just a week or so ago, and they live on Long Island. And I live in New Jersey and there’s apple picking in northeastern area of the state.
I was so delighted to see you meet up with Mary Frey - I follow her all the time, just like I do you.
My faves in the same video!!! Also, I love going apple picking! (I'm from Long Island NY)
I have allergy too and live near boston and that all summer was terrible for me- I was like all time sick but it was allergy, then i tried benedryl and it stopped alergy but it has a side effect for me like stomach get bloated and i had to stop it after some time, and now I have less allergy but my stomach acting weird
Do you watch Chronically Jaquie? Her stomach gets bloated too and they think it's related to her mast cell activation syndrome, just wondering if you have that too. She also takes benedryl during flare ups but I haven't heard her connect the benedryl with the bloating so that is also an interesting connection. My daughter has a hives and angioedema flare up for the past several weeks but benedryl didn't help her too much. She did short term steroids and they went away for a few days but came back as soon as she got off them. Zyrtec and Zantac twice a day and Singulair has helped it stay mostly under control. We're not quite sure what she's allergic too, maybe the Frontline put on her dog, or maybe related to her Celiac disease but not really sure. I'm glad you're doing somewhat better. I hope you get to the bottom of your stomach issue.
Came over from Peter and Mary's channel
I have the same round, golden glasses....they look good on you🙉🙈🙊👍