Vlogging with EDS: Experimental Jaw Treatment, Staple Removal and Starting Rehab | Week 102

[@carolann811]

A tip for battery operated scales: When the batteries start losing power, some scales will start giving false readings. You might want to weigh something else, like a big book or another object that's not going to gain or lose weight, just so on the day you get on the scale and panic because you think you lost 5 pounds overnight you can weigh that object and check if the scale is still accurate.

[@frenchiegirlintheusa]

I happened to came your channel by accident after watching your channel I simply love how kind, and caring you are. You truly care about each of your subscribers. Your channel is very educational as well.

[@FaeriePrincex]

Hey everyone! I'm watching this from the hospital right now, with a bone infection and iv antibiotics. I'm enjoying watching the vlogs to relax. Love to you christina, and your whole family!

[@mrjcdc241]

Christina, you have beautiful style. It's YOUR style and you own it well. Don't apologize for who you are. It's beautiful!

[@decadentnight]

I know right I love her style on her and her personality in general, that's what drew me into this channel.

[@lisaclutton4294]

Your sense of humour kills me!! "I found my ring splints but uuummm... I think I lost my glasses!!"

[@jdiquattro1406]

I came in on week 32 started watching as I was in the hospital with my Cronic inflammatory demilinating polyneuropath or CIDP. I have solmedral infusions of 1500mg 5 days in a row every weeks. Your adrenal system will take back over eventually, you will feel exhausted when you go down on your dose. Just keep getting bone density tests, and adrenal insufficiency tests. I'm still,on 60 mg a day of prednisone in between my infusions, I also have to do IVIG twice a month. Right now I'm bedridden and things are really hard. My husband helps me track my vitals.

[@MadHouseOutAndAbout]

It is so good to see you finally moving and up and healing! You are seriously amazing.

[@reneepasich]

I think I found you through The Frey Life. I faithfully follow you and the Freys. I have several chronic illnesses including fibromyalgia. Just two weeks ago my precious husband of 32 years died of a massive heart attack. I think that the body pillow would be great for me! You are such a dear!

[@rae1957tn]

Renee Pasich prayers for you.

[@franlats0705]

Sending love your way x

[@Trazlynn]

You seem so much better now! So glad all the stuff you have gone through has been working!!!

[@jamielenoir4618]

Glad you're getting settled back in at home. ;). Vlog when it's good for you. Hope your week is creative & peaceful

[@BeverleyButterfly]

I’m so glad you are getting settled back into your routine and getting going again so proud of you xxx

[@-------8019]

The last day in this blog your color is amazing, you can really tell that you're at home getting the rest and TLC that you needed from being in the hospital so long. It is so great to see you feeling so well and so fast. Hope mom dad and sis had an amazing time at the Exotic reptile facility. Love to all and prayers as well.

[@corrindac7416]

I remember coming across your video maybe about 2 years ago. I soon realized your weren't making them anymore at that point so I never subscribed. When you recently started making them again I found you through someone else's. I felt like we had a connection. You taught me things about yourself that was going on with my body and realized I wasn't alone nor was I crazy. You have really inspired me to fight for my health. And every since then I've been subscribed. Thank you for helping me and others.

[@christopherdemorest7755]

The first video I watched of yours was week 68, spinal surgery. My daughter has scoliosis, and although hers isn’t bad enough to require surgery, I was watching videos of people who have had it done. I’ve watched every week since and gone back to see some older ones! I’d love the pillow to give her and help her be more comfortable when she sleeps!!

[@mizboom]

I for one am happy to hear from you whenever. So don't pressure yourself please. You are a delight and a warrior queen, take care of yourself first, us peasants can wait! ☺️

[@sarah67titmanmccurdy55]

So glad I found your videos. While I don’t have EDS I do share some of the same issues from my various auto immune diseases. For someone so young you handle all this really well and your family is a wonderful support team.

[@cyndizebra6119]

Hi Christina! Mine was one of those orders and I got it! I absolutely love them!!! So I ordered more! Lol But please take your time! Keep being mindful of your recovery , your poor body has been through so very much! It’s weird that it’s warm there, we actually had SNOW here in Idaho on Saturday! I’m definitely with you on the heat thing, it’s a killer and I have been so happy to start wearing cooler weather clothes! Bring on the cold!!! So funny you talked about Theramu , as I just went through your blogs to find the code and I currently have some products sitting in my cart! I can’t wait to try it! Thanks so much for the code, it makes it possible for me to order since it’s pretty speedy!❤️ Well sweet Christina, thanks for another great blog, I seriously just love seeing you! This whole vlog dynamic is a bit strange but I truly feel like your a friend I wait to hear from every week. I love seeing how you and your family are doing! Oh I was going to say, if you haven’t thought about this on your own already, to maybe try the theramu on your shunt incisions also. Might help like your neck . Do you get keloid scars? All my incisions keloid then after a long while flatten and spread in that “cigarette was paper” scarring we Edsers get. But first they are raised, purple lumpy scars, sometimes for years. Oh how my body loves to make scar tissue!😳🙄. Ok, much love to you and the fam including your sweet sweet prayer warrior grandparents (that is so very sweet that they pray for your friends!!!). ❤️❤️❤️❤️Please continue to rest and recover sweetie and I will see you next week!!!❤️

[@penelopepolinsneemeyer4757]

Your progress over the last seven days is fantastic! I use Elizabeth Arden Eight Hour Cream on angry scars and even minor skin injuries. It’s truly magical stuff a tube or pot will last you forever xxxxxxxxxxx

[@RebelliousStory]

I was having the same issue with my MacBook! Called Mac support and they walked me through a process for fixing it and now it’s all good. My Mac is old so I don’t have apple care but they’re customer support is still really amazing.

[@dawnlaughlin4873]

So joyful to see you up and about!! God is good!!

[@nancymandle5215]

I’ve been watching your channel from your very first videos - i think you even did a drawing video before any of these weekly ones, no? I mention this because i was so amazed at how much better you seem to be feeling through this entire vlog. May you continue to enjoy this greater level of calm. And thank you so much for all your efforts to create such interesting and informative content. I so look forward to each week!!!!!!

[@kaylabarnes313]

I am so glad you're feeling human again. (Thank you Mary Frey for that line.

[@Jilly_Neutron]

Hi Christina so glad to see you're doing so much better. You are fantastic. I watch weekly, but don't usually comment. I'm going to make one suggestion, but I hope you don't see it as an attack coming out of nowhere. I truly do love your content, and think you are an amazing advocate in the chronic illness community. In the future, I would suggest any content that shows you weighing yourself,, and the associated numbers, have a small content warning (maybe in the description, maybe for like 5 seconds of text on screen before it happens). Obsession with weight and having a ritual around scales in general is common in a lot of people with disordered eating, and is a very hard cycle to break. There are people who are years into recovery (and some are considered to be fully recovered) who continue to get weighed backwards at doctor's offices for years because it is such a sensitive thing for them. I appreciated your disclaimer afterwards, but giving people a warning and the option to not watch could be helpful.

[@IveGotItTwisted]

I honestly don't recall which video brought me to you. I think it was just a vlog a few years back but I've followed your story ever since 😊

[@agirlnamedbrett.]

I think we all felt the same way about the beginning of October and the weather. lol so happy the colder weather has finally shown up.

[@savvihavvi]

I don’t remember what video helped me find your channel, but I love watching your videos! ❤️ I also am a chronic illness sufferer. I have Chronic Fatigue Syndrome & Chronic Pain. I feel like this pillow would be a miracle.

[@StefanieRoyMusic]

I always look forward to your vlogs! They go by so quickly and I always want more! haha

[@mackenziepowell4199]

I love aquafour it works so well for me, I just put a nice layer on and let it set in over night. I recommend covering up where you put the cream, well worth the money in my opinion

[@Silverroses013]

I'm currently on the hunt for an, atleast semi, EDS knowledgeable primary in MA. Glad you were able to find a good doctor!

[@nettieclouse9750]

So good to see you in your little garden!!!! So glad your family was able, willing and eager to help you get situated and a bit more organized back home! That can become stressful with things sidorganized and you can't find what you need even though you have it! And so glad your mom and dad could go and spend well needed time with just your sister! Lol testing a scale! Yes- take the time to recover, your health is so important! Lol being super dramatic - nope not at all. It can be really hard when you can't regulate your temp. I get it... Your style is great, mine is similar! That's so cool and nice that the theramu company sent the stuffed puppy! Lol o my "looks like a toilet seat cover" or more liked like a halo, that's it a halo! So glad you found your ring splints - no more noodle fingers! Ha ha ha so good to see the little stool getting some good use! You may just need to have your computer cleaned...?... You could also reboot to see it it clears it up! As always great vlog- and great big gentle hugs my friend!

[@stacyklostermann8378]

You are such a strong inspiration!!!

[@Exactpie1]

I've given up obsessing about my weight. It was a constant issue for the last decade of my life. Weighing ever day, logging, counting. Now I rarely care (yep, my condition causes weight gain) beyond seeing which way my weight is going. It indicates good days and bad days. It's like getting to exhale instead of stressing about everything I ate.

[@darkbluematter1753]

I’m so early!!! Was watching old Frey Life vlogs and then your video popped up. Woohoo!

[@Alaxl]

Staples are my least favorite closure- they pinch like crazy! I wanted to mention a little thing- if any chronic pain patients are with a pain management doctor who isn't in a state with legalized marijuana, please check with that doctor before you use CBD oils! As much as I want to try them, my doc says they're not fda regulated so some thc occasionally slips through and has shown up in his patients' urine testing. At that point, most docs would discontinue all meds and possibly refuse further treatment. Scary thought! I'm so glad to see you gaining strength week by week! I'm nervous about an inevitable surgery and it really helps me focus on the healing to come and less on the scary parts!

[@kaylabarnes313]

Girl. Rest. We don't want another adrenal crisis.

[@chroniclesofabrokenperson2600]

Please please please be cautious with your jaw. I am also looking into stem cell therapy for my jaw. I had jaw surgery 6 months ago, then emergency surgery the following morning. I have some videos on my channel about my jaw issues and how wrong surgery went. I have PTSD from the trauma. It was so bad that patches of my hair turned white overnight. Please feel free to contact me at any time. We've been chatting on Instagram off and on. I don't want anyone to be scared about jaw surgery, but I do want people to be cautious. I would love to hear any info you find about the stem cell therapy. My PM wants me to research it since I always deep dive into info, but my PTSD keeps me from even thinking about researching. You truly amaze me! Your positive attitude and incredible mental health is so inspiring. I'm so thankful that you take the time to share your journey on KZbin. 💖🦓💖🦓💖

[@erin723]

Hi Christina! I love you for sharing anything you choose to share; timing is irrelevant. I have TMD issues from a car accident 30 yrs ago (no seatbelt, hit the windshield with my forehead and caught the steering wheel with my chin on the way back down) so I’m always curious to learn what you’re learning with your jaw issues. In fact, one of your videos eventually led me to the opportunity to be a guinea pig for my (NUCCA) chiropractor and a dentist who is learning more about TMD (and more). While I do not have EDS, nor any other issues you’re dealing with, my jaw and cervical spine issues create huge amounts of pain. The only thing that relieves my pain is to have a NUCCA adjustment. But because of my jaw instability I can easily throw my neck out of alignment if I chew something hard like peanuts. Or even a salad if it’s more than a few bites to chew. 🙄 It’s the domino effect - aggravation in one area triggers the related areas. And it cascades down through my sciatic nerve. Your experience has taught me to be grateful for the movement and range that I have. I can’t imagine not being able to look down fully. I have difficulty looking over my left shoulder while driving, which is not fun, but I’ll accept that as a limitation. (It’s better when I’m in alignment.) Regarding your jaw, do you have degeneration? That’s my issue with the “stuff” in the joint. My condial is rubbing up against the backside of the joint capsule. Every time you talk about your jaw I wince because I cannot imagine what you’re dealing with. Do you think you could chew food at this point? It all seems so frustrating and I’m sure the jaw is not at the top of your list. Sorry for the book of a reply. I watch a lot, then finally have time to type a reply. Thank you for sharing yourself (and family!) and your journey with us! Regardless of how much you vlog or when you upload, we are here for you. You have taught me so much about my body and life and I’m forever grateful. 💖

[@shekeyra100]

Never feel you have to say sorry to us all that matters is your ok and family and friends i want to say thank you for allowing us be part of your life also i think jaw doctor knows his stuff and ive read alot of amazing things about stem cell treatments and botox i love frey life got few clothes and pics of theirs xxx

[@loiscassels8966]

I love your little garden (and you).

[@stellannie86]

The first videos of yours that i saw, were some of those Living with EDS -videos. I was going through KZbin (and internet in general) learning about EDS and your videos showed up. :)

[@sfie9388]

you most definitely not a bad daughter for editing on the floor!! At my dad's we have floor radiation heating and we have a nice carpet on the floor so when we play family games everyone prefers to sit on the carpet instead of sitting on the couch or sitting at the table...

[@WackyLisa]

My scale trick: use my phone to take a photo of the display on the scale. It will take practice but it does work. That sit-stand exercise is hard.

[@layray210]

If the ac went out once it’s probably on its way to going out for good. Y’all should get it looked at! Just had to have my compressor replaced

[@emmacarroll3665]

Omgosh I can't believe I missed this vlog but I just had the same surgery at the same place (I recognize the parking structure) three weeks ago during the COVID crisis!!!! I had the same good experience with him.

[@debra_boyer]

I found your video about your top five spoonie lush products 😊

[@yogabirds]

I've been on iv steroids for many years as I have adrenal insufficiency and don't absorb anything through my digestive system compliments of my wonderful mast cells. We try really hard to keep them as low as possible, but it's dificult at best. I'm not sure which kind you are on and the potency equivalents varies, so I can't tell you how many mgs to decrease. With as sick as you have been, you need to go down very very 🐌 slow. Pill wise, that is going down by 1/8-1/4 of a tablet every 3-5 days. Feeling more tired, having liver/abdominal pain, increasingly achy/fluish, more mast cell or pots reactions, decreased gi motility, light headed, or just off are all signs you need more (not getting enough can KILL you, so no waiting a few days)! If that happens go back to the last tolerated dose. Your endo will probably think your nuts to need it lowered so slow, but it really is necessary with adrenal insufficiency as well as eds and mast cell issues. I'm so glad you're doing so much better. Keep up the good work!

[@susanswanson7757]

I love all the Halloweentown movies.

[@ScarletCandlelight]

I also use my hip brace (same one you have) to hold up my cell too

[@annagev2171]

Hi ❤️ My daughter's Mac had the same problem - she took it into the Apple Store - it was full of iPhone backups that took up lots of space - I'm not a computer expert but maybe you could look into that. The Apple staff deleted the extra files for her and now she is good to go.

[@533134]

Halloweentown is my favorite!!

[@carolinemoore3771]

Hey Christina! Where can we get the Therumu code for EDSers? I also use it and love it, but I have been paying full price!

[@kimleon-guerrero9980]

Hi Christina, we just had a pretty good earthquake here in Guam while I was watching your video, we’re been having pretty regularly the past couple of months. 🤪 Congratulations on getting your staples out, why not try putting the Emu oil on your scar it might help with the healing. Thanks for the video, it’s always nice to see your beautiful smile. ✨💖✨💫

[@ninamayer9254]

Omg this really came unexpected! I travelled to Guam a month ago, so cool to see someone from Guam watching Christina's vlog too!!!

[@kimleon-guerrero9980]

Nina Mayer, It’s a small world sometimes. I’ve lived here for the past 11 years. My husbands family is from here. I hope your stay here was good, we’ve had so much rain this year and a typhoon too. Christina is a great inspiration to me and has helped give me encouragement with dealing with hEDS just by being her beautiful self. 💞💫

[@MOJORAPSCALLION]

This video bought me to your channel as it came up on a search.. 💚 would love to enter the pillow give away competition 💚 great tips love the plotter I’m getting one!

[@sophieleanna9391]

Love The Frey Life !

[@casinochick100]

hey where did u get your neck pillow? love it and need one mine isnt great

[@533134]

When you put something in a safe place then can’t remember the safe place 😂

[@coraliedubois5890]

Maybe you should ask to get your cortisol tested… I was on high dose prednisone for my lupus for over 3 years and I remember when I started tapering down it was soooo tricky. My immunologist had my cortisol tested every 2 weeks at the beginning just to make sure I wasn't dropping too low and go into shock and even then, sometimes I would call my clinical nurse and she would have my doctor fax an emergency req for extra bloodwork. At some point I had to get my cortisol tested 2 times a week because I was responding very poorly to my steroid taper and sometimes that meant I had to go up again a little bit for a while. Tapering down high dose steroids was really hard.

[@lisacrumley4979]

Christina, You seem so much much better in each Video! Your scar may go down. Mine was pretty red as well. I use something to fade it alittle. Maybe your balm will work at some point. Steroids I think they are the culprit and you were so use to the same dose. It should get better. Have they ever had concerns about steroids since they can raise the pressure in the head? I had no idea either till my Dr told me no more steroids. I was on them for 5 yrs. For me the best. Well I hope it gets much better for you. You look so much better. Thanks for always sharing your life. Lisa💙🙏💙

[@diroses6022]

I love Halloween Town!!!

[@Unsocial01]

Great vid....You look great ! 💕🙏🏻👍

[@charlietarantola3570]

We had snow not to long ago I wish here it would decide🤷🏻‍♂️

[@Hi_Felisha]

I love when sammi makes an appearance 😍

[@alysonp5844]

Bull is a fantastic tv show. It really is brilliant..

[@kenzie-anne]

u gotta get used to the lower dose... when i cut its like a bad withdrawal for a week or 2, flu feeling.. if it doesnt go away then i go back up a bit. its hard.. my adrenal gland is dead... im on steroids for life unfortunately. but i can get down to 5mg's lowest. ive got lupus btw u are an inspiration! also i bullet journal, personal and medical ones. the great thing about bullet journal-ling is u can make it what u want, habit trackers, or medical trackers work wonders for me. also i feel u.. i need my AC!

[@lainielou9331]

Lauren's a hater of Halloweentown what a lameo😂 Lauren we know you're literally too cool for us but you can't hate on the OG Halloweentown. Love you both lol💖

[@chellebelle4296]

Love your scarf!

[@squirrelwithtoomanyhobbies]

You should crochet a little cover for the head rest on your neck brace.

[@firlaith29]

I believe what the Doctor was talking about is a PRP. It really works. I have really bad fibromyalgia and my elbows were really hurting and my fibro doctor suggested the PRP. You should try it cause like I said the shot really works.

[@rachelmartin3631]

Wow! I just found out that my neurologist has EDS. Crazy small world. I am in Utah and she says the university is opening a new EDS clinic here.

[@babybluecheeks]

It's 6am here and I haven't slept all night once again, all I want to do is sleep but I can't do annoying!

[@LecheVitrineUK]

You are a floor dweller like me! I like the floor!

[@VictoriaPaikin]

If you're using Final cut pro it makes backups. You need to delete the event and all your memory will be cleaned. I will happily walk you thrue it. PM me if you like.

[@christinadoherty3212]

I still use iMovie

[@VictoriaPaikin]

I'm guessing that it is the same problem. It makes at least 2 backups.

[@VictoriaPaikin]

I checked the files with iMovie​ I think it's making the same problem as final cut pro

[@MagicLuver101]

Does any one know what the promo code she mentions is?

[@Not_a_snake]

I’ve been following since like week 15 I think. I really don’t know anymore.

[@krystal2202]

it's russian sage. I hope everything gets back to normal. I mean it will.

[@IsabelleJane]

I love Halloween Town. 🌈❤️

[@sophiehobley828]

My endo always teaches me "if in doubt, take more steroids" because for ME the short term risk of being hypoadrenal is much greater than the risk of having too much steroid - I have secondary adrenal insufficiency (Which I think sounds a bit more like you), and it might be worth asking if that applies to you too? I'm very complex, but I've had other SAI friends be taught the same rule. For my hypoadrenal symptoms I often just know something is wrong and don't know what (My friends know that if I'm a tearful mess who just feels so poorly but doesn't know what's wrong, that's the point that they take over and insist I take steroids - I'm getting better at spotting it myself but I don't always call it right. Increased POTS symptoms for no obvious reason (especially if I'm lying down and my BP has a systolic lower than 80). Dizziness, weakness, unexpected naps (Which you seem to get in this vlog), nausea/vomiting, abdo pain, low blood sugar, poor recovery (So if I'm walking and my stamina is lower and then I sit down and it takes longer for me to feel human again). I suspect your 6pm dose is too low - at lower doses, halving shouldn't make much difference to how you feel if you are still taking enough. Obvs that's a call for your Dr to make but I know that personally as I have many chronic illnesses I need a slightly higher than normal steroid dose just because my body is constantly fighting, so it could easily be the same for you :)

[@alyssawssinging4039]

Hey Christina

[@andreawilson3596]

You are adorable❤️❤️🙏🙏🙏🙏

[@nickey081]

Check out David A. Cox he has full classes on the Mac here on KZbin x

[@decadentnight]

I was very curious and intriguied to know your weight we weigh about the same and I'm not chronically ill. Now I'm wondering how tall you around and if we're the same height.

[@andreaberezowski998]

Possibly withdrawal from steroids?

[@heretoday788]

It's Russian Sage. One of my favorite plants to look at, but I can't stand the smell...I find it nauseating!

[@kimberacrylic]

I think I'm entering the giveaway right. The video that got me into you was the one where you thought you had a mini stroke cos you were off blood thinners. I found you by searching chronic illness. God, I need this pillow. Hehe

[@colormezebra2841]

I was looking for the code for 50% of Theremu products, but could,t find one. Is there a special code we should use?

[@SugarCookie3325]

I am ashley from insta i am drying to buy from etsy haven’t been able too

[@anne-marijansson4980]

❤

[@kaylabarnes313]

Put the Emu oil on those scars.

[@rogerorchard2317]

bit odd while watching your video, I have Bull on in the background

[@heretoday788]

It's Russian Sage. One of my favorite plants to look at, but I can't stand the smell...I find it nauseating!