Vlogging with EDS: Progress and Setbacks. Mistakes Happen | Week 47

[@EmetTauber]

I want to thank you and your mom for taking care of the girl without a caregiver who is a good friend of mine. We both have trouble with that part of this journey and I can definitely tell you that I couldn't do this without the support of the EDS community and all my friends. Not everyone has a good family support system, and thats a reality of being a person. But we can all work with each other to take care of one another.

[@christinadoherty3212]

+Emet Tauber 💜 Anytime. We zebras have got to stick together. We are one big family and always try to be there when someone needs help.

[@20Unbelievable06]

if you have the permit, you are disabled enough! just because a disability isn't visible, doesn't mean it's not there! people REALLY need to learn this!

[@christinadoherty3212]

+NotDeadJustYet I know. Its so sad. I don’t know how I would have shut down the situation had she not seen my brace.

[@Julia.connolly54]

Doing something scary like that can get you thinking about what ifs. Seeing you cry really made me want to give you a huge. You are such a positive person in the face of your chronic illnesses. Wishing you only the best. ❤️

[@darkbluematter1753]

Great vlog as always. The IV mistake was scary but anyone could have done that and given the pain and fatigue you deal with, I am continually amazed and impressed by how much you accomplish and how well you take care of your body. 💙

[@christinadoherty3212]

+DarkBlue Matter Thank you! Its scary how easy it is to make a dumb little mistake like that. But it was all okay in the end.

[@lotjesdotjes3140]

Well said christina, I always say the same thing "it changed me as a person". I am glad about it, I learned so much and I respect the most tiny things in life because of it. This life is different but we have to deal with it, and we will win the battle of awareness xxx and much love and a hug for youre mother xxx

[@christinadoherty3212]

+Debbie Hellenbrand 😘💪❤️

[@loiscassels8966]

So sad to see you crying. Don’t blame yourself, we all make mistakes. There is not enough air in the tubing to harm you. Glad you’re OK.

[@christinadoherty3212]

+Lois Cassels 💜

[@TeddyCrochet]

Girl you spoke to my heart today! Thank you. ♡ I had a PT appointment gone bad with a guy who knew nothing about EDS and said to push myself. I left in a lot of pain & feeling defeated but after hearing the advice you passed along I'll be using it to find a better & more qualified PT! I'm sorry the lady yelled at you at first over the parking spot I get that all the time too and I hate feeling like I have to justify myself. There are so many "disability police" running around it's ridiculous. Not sure why they have to be so rude :( Thank you for showing your raw and real moments - as hard as they are we feel them with you. I teared up when you had the air scare & I can tell you I would have reacted the same way! ♡ Thank you for sharing your story. Xoxo.

[@christinadoherty3212]

+Amanda Mroz Oh good, Im glad that information was helpful to you. It really is so hard to find that right therapist. 💜

[@pkendlers]

Christina, You and your Mom are an awesome team! :D Blessings to you both

[@christinadoherty3212]

+Cheryl Coderre Thanks! Shes the best!

[@BNHAalltheway]

You are amazing how You deal with Your illness sorry You are having trouble with the IV You are so sweet that's great that You met up with friends and had like a party in the lobby thanks for vloging God Bless

[@christinadoherty3212]

+Paula Castle Thank you! ❤️

[@dawnlaughlin4873]

The mom in me wanted to hug you when I saw your tears. You are amazing, but remember you are human too. So joyful that you are okay!!

[@christinadoherty3212]

+Dawn Laughlin Thank you Dawn! You guys are so kind to me. It really means the world!

[@niamhseren9913]

It's ok my love. We all make those types of mistakes. Sometimes I totally forget about sanitising before catheterising and I get so stressed when I do that! It's so annoying but don't be too hard on yourself. About the relaxation stuff, Pacifica is a great app. It has a community, relaxation, mood and thought tracking etc!

[@mauragrier6958]

You're definitely not the only one! Once I flushed my line without wiping it with an alcohol swab and I bawled and flipped out😂. I was so mad at myself but luckily I didn't get an infection or anything so that's really good but I can understand how frustrating it is!❤️

[@christinadoherty3212]

+maura Grier You sound exactly like me! We are the hardest on ourselves. Glad everything was okay for both of us 💜

[@RebelliousStory]

I literally lol’d when you said you’re a bit of a control freak. I am the same way! The nurses kept trying to get me to teach other people to access my port and start my fluids but I’m just only comfortable controlling it myself. I know I’ll probably have to teach at least my fiancé eventually but I do NOT look forward to it 😬

[@christinadoherty3212]

+Bethany H I hear ya! 💜

[@peachi3sweeti3]

I always look forward to Monday because of your videos 💕

[@nettieclouse9750]

Always fantastic videos by you! Awe the "prayer boxes"! Cool you brought that up- My hubby likes Altoind mints and well he likes them enough he gets them from Costco. Because he does we dump all the mints into a plastic container and we clean out all the altoid tins and I send them to a young lady that I am good friends with who also has Chiari malformation and EDS and all the lovely (not so lovely) comorbidities that come along with all of it like us. She turns them into "prayer boxes" and "encouragement boxes" and then sends them out to other people! Thank you again for showing us the push medagrip splint! Like you I have the ST3D silver rings pints while they do actually help the cmc joint in most directions they just don't help in the abductive/adductive directions. But for sure they do help guard the cmc when it comes to the flexion/extension and the opposition/reposition! The PVX extension actually keeps us from some of those positions! They truly did a masterful job in design, function and engineering bearing in mind all of the EDS community! I was having issues with the cmc and many other areas befor the splints and my OT was having a tough time figuring if the splints would actually hit in certain areas to be effective soooo I just called the company and chitter chatted with the kindhearted fell who actually makes them for us and he gave me the complete lowdown on what it does and does not do! What a great complany!!! O and ha ha your comment "just when you think you have a good side, that good side turns on you" I was cracking up! Comic relief is a great way to roll in our daily living! As always I appreciat you taking the time to do your videos and let us into your life! Nettie

[@christinadoherty3212]

+Nettie Clouse So glad you had a good conversation with the company. It really does make a big difference when you can talk things through with a real person. So often we are stuck trying to figure things out on our own.

[@ScarletCandlelight]

Was thinking about how you have been doing all week. When ever I have flairs I think of all my Zebra and spoonie friends and hope they are doing better then me. I'm glad it seemed to be a nice week for you. Can't wait for the next video, I love watching each week.

[@shekeyra100]

Take time to breath before doing feeds or meds you are a beautiful amazing strong young woman who i wish i had a magic want and make it all better but you are a role model for anyone and i know your family must be so proud of you sending hugs from britain xxxx

[@Huldren1]

Have you thought about selling those crocheted shrugs on Etsy? I would most definitely buy one or two. My shoulders and neck always feel cold, and they are so cute and lovely! xx

[@christinadoherty3212]

+Huldren1 I may be persuaded 😊 But I would definitely want to work with the buyer to pick the perfect yarn and stuff. I would love to learn a bit more complex pattern. The ones I made are very simple

[@Huldren1]

It would be awesome to be able to ask for a particular kind of yarn and colours! Hopefully you will have time and energy to do this one day. Sometimes simple is the best :)

[@BeverleyButterfly]

Those crochet shrugs are so cute OMG I’d totally pay for one of those so cute and great for resting! That prayer tin was so adorable too what a lovely idea xx

[@christinadoherty3212]

+Miss Adventure Aww thanks! I assure you its a pretty simple thing to make. I could probably teach you. Although if you are serious I could maybe list them on my etsy someday.

[@BeverleyButterfly]

Christina Doherty I tried crochet but then got depressed and now can’t remember how! They so nice you should totally list them honey

[@dawnkeith4444]

You are so sweet to everyone

[@meganer12]

I’ve found lemongrass to be near-magical when it comes to pain relief. It’s not instant, and the scent can be overwhelming at times, but I can put it on before bed and the pain will be completely gone by morning. Not sure how that’d work with your mast cell, but if you can tolerate it, it’s worth a shot! Also, a lot of your feelings about your EDS are how I feel about being a cancer survivor. Funny how diseases can change you so much.... Lots of love :)

[@christinadoherty3212]

+meganer12 I think that just having had to live with a serious illness creates a special bond of understanding between people. I love lemongrass! Its weird, its a smell I can tolerate but I can’t tolerate on my skin. So I started using lemon oil instead. My favorite combination in my diffuser right now is peppermint and lemon oil. 👌

[@jaclyn.jenkins]

finally!!! i’m a control freak over certain things and my reason is exactly the same as yours! i’ve never met anyone that thinks that way. and regarding the air, yes mistakes happen. but to calm your mind, it actually takes quite a bit of air to cause an embolism. i think hollywood and shows over dramatize that (like someone injecting a single air bubble and they die). i hope that can ease your mind.

[@christinadoherty3212]

+Jaclyn Jenkins Wahoo, kindred spirits! Ad yeah, thats what I read during my frantic google search. But at that point I was mostly just upset that I could so easily do something like that.

[@scarecrowmax1192]

Forgetting to purge your line had to be one of the worst things to have to worry about, and completely opposite the whole de-stressing. I'm so glad that it ended alright though!!! It's good that your vision therapy went super well, and that you had a solid physical therapist down there that you know you can go back to next time you're down there. I'm sure you're ecstatic to go home, and I hope you had a great trip back! My mom's physical therapist just gave her a how-to to get her hip back that seems different than yours if you want me to send it to you just let me know! Love and spoons for both you and your friend who had surgery!

[@christinadoherty3212]

+Dana Max I know! So scary! But I lived lol. But yeah... not exactly the most relaxing couple weeks. The universe was not on my side 😂

[@christinadoherty3212]

+Dana Max And im definitely interesting in the hip thing. I mean, Im sure its different depending on which way it dislocates. But I would love to know if there is an easier way

[@scorpleeon]

You are 💯!

[@sarahagen756]

Pre-op waiting is the worst. It really makes me anxious and I am already prone to anxiety. The waiting just makes your mind wander to irrational places that make you worry.

[@christinadoherty3212]

+Sara Hagen Agreed! Its Seriously the part I dread the most!

[@Nbbbtrv]

I hate pre op so much and at my first surgery the doctor told me that every time you get put under it increases the chance that you won’t wake up and I’ve had quite a few surgeries so I’m always thinking about that in pre op

[@cyclemania6280]

Don't worry, you need lots of air to cause problems, a giving set or extension set isn't large enough volume. I have had lots of line sepsis. I have had lines last for a looooooong time at home when I have been the only one touching it (accessing or infusing, taking bloods) and whenever I go to hospital or have to let a nurse do it, I get septic. It is so annoying cos then they have to remove your line and I have no more veins remaining that can take a long line. I am very paranoid, I won't let anyone touch any lines.

[@christinadoherty3212]

+Cycle Mania Im sorry you have had to deal with that. I definitely notice the nurses in hospital are much more careless. They are just in a hurry. Its scary

[@Sarah.reads.sometimes]

I'm so mad at those nurses for you! I'd have been SOOOO mad at that one for doing that to the port... and that on call nurse, just no. I commend you for getting through it and not letting it keep you down!

[@christinadoherty3212]

+Sarah Poison I just always try to give everyone a break. I mean, I saw how easy it was for ME to make a mistake. It happens. It stinks, but life has to go on.

[@hambeeinwall]

Woohoo!! ❤️❤️

[@TaylaPotayta]

Don’t you dare leave me!!!!

[@shekeyra100]

i think your meant to go live there in your future and you would be a great counselor for your conditions and all those who are too having to go through sim or just need someone to talk through or need help understanding there own conditions and limits and operations etc

[@madison8568]

I have totally almost infused air in my line too. It happens, especially when you are doing IV treatments for a long period of time mistakes will happen. I have made a lot of mistakes and nothing bad had happened to me at least (knock on wood).

[@christinadoherty3212]

+Madison Its so scary how easy it is, isn’t it? So glad we are both still alive. 😂😂😂

[@BaileyVaz]

The PT answer is SO helpful. I have a wonderful gal I've seen a few times, but the PT there just isn't right for me/my body sadly. She does more ortho though. As for surgery- post op is worst, IMO. Either that or the first day home. SO much pain and trying to figure out how to adapt to day to day while healing.

[@christinadoherty3212]

+Bailey Vaz I hear ya! Ive been to a lot of PTs and this is the first time I have been successful. Everywhere else was sports medicine and they really just focused on one area instead of my body as a whole. That did not work well for me...

[@lorinewcomb4717]

You are amazing

[@christinadoherty3212]

+Lori Newcomb ❤️

[@ecologist_to_be]

Where I am in UK we only get a maximum of 5 or 6 sessions of physio. And you can't choose one who knows EDS. You can go private if you have lots of money...at least £60 per hour. lol Seems different where you are

[@christinadoherty3212]

+Sarah Camley Its definitely a bit different here. I have insurance that allows me to choose my specialists. So I get a script for physical therapy written and I can kinda just take it anywhere. Not everyone’s insurance allows that. As for the number of appointments I have, I have monthly reevaluations and I guess they have so far been able to justify it to my insurance since they can continue to prove I am making progress but am not healed.

[@auradragonfly]

Aw sad to see you cry. Mistakes happen it's just good there were no serious consequences. So I'd like to know where did u get your hip brace? All I have are the cloth like type with velcro that goes around the thigh too. I'd like a harder type like you have. I have lot of hip pain. Just grateful I haven't yet dislocated nor got it out of socket just hurts it easily. Thanks! Take care. ^^

[@christinadoherty3212]

+Jessica Tieking I had my braced fitted and ordered by my orthotist (Erik the brace guy 😊) and I believe the brand on it is Newport. Its not what I call a functional brace. Its an immobilizer. So unfortunately its not an everyday wear. Also, be careful if you order hip braces online to make sure they are holding your hip in the right position for your needs. I have chronic anterior dislocations, so this brace holds me in ABduction at the angle set by my therapists. I would hate for you to spend a bunch of money on a brace that makes things worse. Definitely consult you doctor or PT about what sort of position your hip should be braced in. This is a really fantastic brace for sleeping if your dislocations happen at night (or during seizures)

[@auradragonfly]

Christina Doherty Thanks for all the info. Unfortunately I am not seeing a doctor atm. I haven't been able to find a PT yet. The one in town does not list EDS on the Internet. I haven't looked into what the price would be. I'm not sure if I can afford it yet. We haven't been able to afford any insurance. I will try to figure things out. Or disability or something. I am no good at paper work and complicated things. I have ADHD and not the mental....ness for it lol. I do appreciate all the info from you tho ! :). Thanks so much. Btw my mom is here visiting from NC (I live in TX); and she said she thinks you're beautiful, I showed her some vids, I'm still trying to catch up lol.

[@hesterhenrietta261]

My hips dislocate all the time too 😣 I wish I had tips but I don't 🤷🏻‍♀️ Hope you feel better soon 💗 Did the knee brace help with your bruising by the way??

[@jadejewell2623]

Hester Henrietta in a previous vlog she said it did

[@mackenziepowell4199]

With my hips I have to be super aware and not out my waight on one leg, I have to stand with equal amounts of pressure on my hips. But hat doesn't always keep them in place, as always I'm told do more pt!

[@christinadoherty3212]

+Hester Henrietta Same! People always ask for hip help and im like “uh.... I wish I knew” hahaha hips are tricky since they are such big clunky joints and legs are heavy. And yes the bruising did start to disappear as soon as I moved the brace over

[@poppycopper1]

I forgot to prime my iv once and was told you need at least 2mls of air to do any harm and the tube doesn't hold that much? Wether that is true or they were trying to calm me done I'm not sure. Maybe I should look it up? Big hugs xxx

[@christinadoherty3212]

+Poppy Chocky I read similar things while frantically googling it. Im glad to know it would have probably been okay even if I got a full tube. But I was definitely pretty rattled anyway.

[@ieatemos]

Congrats on your vision therapy achievements! If you guys like that PT guy make sure to leave a good review somewhere like Google reviews so others can know he's awesome. :) I do have a question: Does your body get tired of your braces? I have knee braces and they help with the daily pain but then at night when I take them off it's like UGH :(

[@sayurimei]

I will like to know that as well. I wear a soft neck brace during the day, and i CANT wait to take it off during the night; but during the night I have to wear special braces on my hands to sleep, I sleep great but as soon as I wake up I have this sudden urge to get them off.

[@christinadoherty3212]

+iEatEmos Oh definitely! Its kind of like taking off your bra at the end of the day lol. They hold everything in place, but they get agitating after a while. I get a lot of bruising as well. So whenever I can shes my exoskeleton it feels so good hahHa

[@sayurimei]

Gosh, now I´m scare of the nurses here, they never purge my IV´s before giving me new fluids, they only hang the new bag and go and I can see the huge gap of air going in and I have the tinniest veins in the world. Also I wonder, do all EDS patients have small veins or is it just me? Because by the time a nurse gets a good vein is usually with a pediatric cathether line and like 4 or 5 tries later (when i'm lucky) and I ended bruise like a peach. Also, completely out of topic, but someone could point me into the direction on where should I go look or which doctor I should look for my dysauthonomias? Yesterday my reumathologist saw my fainting spells with changes in my BP and told me those were part of my dysauthonomias related to EDS and then send me off. So I don't know which doctor should I go now? Any suggestions?

[@christinadoherty3212]

+sayurimei Well, I have learned from everyone here that that amount of air isn’t a huge deal, but if you feel uncomfortable don’t be afraid to speak up. Its a valid concern. As for Dysautonomia, Most of my symptoms are managed by my cardiologist although some neurologists treat it as well. You just need to find one that used to seeing patients like you. It may take some calling around.

[@jessd956]

Hi Christina! I am interested in how one can tell that their CMC joint is unstable. My fingers are quite hypermobile and I am being fitted for SRSs now. We are thinking I will need about 18 altogether, and so far I have been fitted for 5. I haven't asked my hand therapist yet if she thinks my CMC joint is also hypermobile. Is there a way to tell that's obvious? Also, is your thumb splint a 3D with the spiral removed? Thanks! Love you and your vlog.

[@christinadoherty3212]

+Jess D My symptoms with my CMC joint were significant. Mostly it occurs at night, so sometimes I brace them to sleep. Basically it was just dislocating with any motion, sore, super bruised, and swelling off and on. I tried wrist braces from the drug store but I was allergic and it didn’t help enough. I now use the Push by Metagrip splints when I meed CMC support. My SRS are indeed the stable thumb splint with PVX and bracelet but no spiral. The spiral got in the way of the swan splint on my other joint. Although the SRS splints aren’t made for the CMC joint I have found that by stabilizing those other joints I can get away without CMC splinting most days and it has stabilized quite a bit. At one point I work a hard plastic splint on it that we slowly shaved down and that kinda did the trick to stop the dislocation cycle

[@beccacharpentier5866]

Can you post what kind of sports tape you use under your brace?

[@christinadoherty3212]

+Becca Charpentier Ummm I don’t remember the brand. But I just got it at CVS. Its just self adhesive wrap. So it doesn’t stick to your skin, just to itself. Most pharmacies probably carry a version of it

[@briabear1]

Christina and other Zebras, I need your help! I'm thinking of setting up a Etsy or Facebook shop to sell EDS type things (such as g tube pads, tube shirt clips, and some new ideas I've created on my own) what are some things y'all have wanted or wish someone had created? Or what are some things that have really helped you that I might be able to make and add to my store? Your help would be appreciated as I want this to focus on EDS patients and branch out to other chronic illness useful crafts. Thanks in advance!

[@christinadoherty3212]

+Britt_Ellis8515 Hmm well I would definitely like to see more cute backpacks/bags that can hold feeding/saline pumps and bags and also have a pocket to keep your other stuff in. The backpacks they give you are boring and black with no room for personal items. So you end up needing to lug around two bags

[@briabear1]

Christina Doherty thanks for that idea! I'm going to start putting some ideas together, but once I have one done you'll be the first to know!

[@gooshiesarah]

You can stay as long as there is room for me to come visit :)

[@Huldren1]

Oh, I felt so sorry for you, when you were scared and upset. Really glad to hear everything was ok. Maybe this will make you laugh a little: Not exactly a medical mistake... but I cut my mum's short hair and got distracted. I nicked her ear, which made me cringe, her scream and the blood flow! Needless to say, she was a little nervous the next time.

[@christinadoherty3212]

+Huldren1 Oh my goodness! I bet she was lol. Mistakes happen, im still alive, so luckily it was just a silly one this time

[@LaurenVasko]

I'm sure you answered this, but I missed it. What were you doing for these 2 weeks of treatment? Were you going to a certain center to help your EDS? I have EDS as well and I'm just curious.

[@christinadoherty3212]

+Lauren Vasko I was going to a special vision therapist who specializes in treating some of the neurological issues I have with my vision. I basically was just going to their office for a few hours a day to do some exercises that were targeted to retrain my eyes and brain to work together. I also was seeing a different physical therapist while I was there, but that was mostly just to fill in the gaps I missed from being away.

[@LaurenVasko]

oh ok, thanks for replying!

[@zyciewusatvbygosia8880]

prayers work i have bf that have cancer and i am praying that he healed from it- i am using prayer on beads its like 1 h prayer but its thrugh 54 days and its called novenna to the queen of holy roasary of pomei and all novenna is for one intension and Mary - from heaven promised that she not leave anyone wihtout help, i prayed that prayer in past too- and i was healed from my stomach issues- as my stoamch problem was not digestion food corectly like no enzymes were to digest and i was burping all day long and couldnt sleep, had air in stomach all time going there maybe stomach was open that was making trouble with breating like taking breath in as stomach was full of air- that problem was taking like 3 years then i got that prayer and prayed about healing and then withthin few months i got better and then healed i guess :) So i recommend that prayer- i live in usa now but come from poland orginally and maybe not many ppl know that it exist

[@thevoid5553]

Did he heal?

[@NeonnBalloons]

It's definitely possible for air to enter your system through an IV! It's scary thinking that nurse would tell you that. Butttt... the amount of air in an IV line is not enough to cause harm to you! Maybe an infant but not you :) I'm so sorry for the situation you had to deal with.

[@christinadoherty3212]

+Haley Pletcher Definitely scary, definitely won’t do it again!

[@nikki10114]

god i hope to meet u someday :)

[@mackenziepowell4199]

I got so upset when I saw you crying

[@fables4564]

Can we just be real for a quick second.... braces are ugly as fuck! Lol. Seriously why hasn't anyone made any cute braces?! It's 2017! Someone needs to get on top of this.

[@sarah_chalk]

Fables 456 Woah now, my (everyday) AFOs are Zebra Print with lime green and blue Velcro straps, and my KOs are Purple. Then my “Races Braces”: AFOs are Purple, and KOs are a shiny blue! However, my SIJ belt, numerous wrist braces, spica splints, and everything else: not cute. At all. Custom braces definitely gives you much better design / color options & choices. The Ring Splints are also quite pretty as well!! Expensive, but pretty!

[@fables4564]

Sarah Chalk 😱 are you serious!? Why hasn't anyone informed me that you get cute braces! I've been lied to! Lol.

[@christinadoherty3212]

+Fables 456 Right?!? I have actually always wanted it to be my job to make braces. Even as a kid before any of this happened (ironic). I would love to be able to design more stylish bracing for the future.

[@scarecrowmax1192]

Forgetting to purge your line had to be one of the worst things to have to worry about, and completely opposite the whole de-stressing. I'm so glad that it ended alright though!!! It's good that your vision therapy went super well, and that you had a solid physical therapist down there that you know you can go back to next time you're down there. I'm sure you're ecstatic to go home, and I hope you had a great trip back! My mom's physical therapist just gave her a how-to to get her hip back that seems different than yours if you want me to send it to you just let me know! Love and spoons for both you and your friend who had surgery!