Vlogging with EDS: New Doctor Drama, Pinterest Hacks, and Getting Out | Week 71

So sorry this video is late in going up! I did my very best. I got stuck in the car all day Monday and now I’m on hotel wifi (Yikes!). But I do have a storytime video going up tomorrow for you guys!
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[@lauren3596]

There needs to be tinder for doctors lol

[@tia1366]

I was on Tramadol for 4 years and after I was taken off of it I felt the exact same way. It affects serotonin production so when you stop taking it your body is like "hey what gives??" I hope the symptoms improve for you soon

[@TaylaPotayta]

Thanks for filming the show and the kind words love xoxoxoxo

[@dearestemma]

Emperor's New Groove is the best! It definitely is sooo underrated.

[@cocolions]

I also had the nerveblock in all my six knee surgeries, works like a charm :) BUT with us EDSers it is quite likely to leak (aka wet pants kinda feeling) it even had to be reinserted with me (but still, very much worth it) :)

[@kerrysmiles]

Trish has literally saved you. I don't blame you.

[@curtisbemis6640]

The emporers new Grove is an awesome movie , God the memories of being young and having no worries in life school and friends were all I cared about

[@inarigitsune]

I've used my finger splints under gloves, and a wrist brace too, since I work in a lab. Different brands size things differently, so a different brand in the same size might work better for your hands and splints, sterile gloves wise. I can't go to the conference this year. :( Too much is scheduled for August for me. Also we're the same exact height. On the crazy craft project front, I've knitted cat tails for costumes with fur/eyelash yarn. I've also knitted a cat hoodie, it was not appreciated by the wearer.

[@agirlnamedbrett.]

agreed the emperors new groove is HIGHLY underrated, also in my top ten.

[@Mytitus2journey]

The day you were having your doctor drama, so were we. We are going to be looking into a new doc for our MCAS. From our experiences that new doc you were trying out probably knows enough to be dangerous, which is where our allergist has landed. Our PCP is actually a PA but in practice with an internal med doc. She's not an expert in our conditions, but relies on our experts to help with that. But she is super supportive and gives hugs! Hope your trip to VA goes/went well.

[@scorpleeon]

Take good care, enjoy your commentary on your week so much 👍🏾

[@Stress-relief-insights]

So glad to see your blog hun ❤ I always worry something has happened to you when they are late.... (EDS worry brain lol) Super happy all is well my zebra sister. I totally understand the frustration of trying to find a new primary care physician I have the same issue.... Good luck hun, I hope the perfect Dr appears somehow :-) You are doing amazing! Big hugs from Nicole in NZ xoxo

[@shekeyra100]

i feel its going to be a constant fight with that doc and what doc only works 2 days also he knows nothing really about you but your specialists do but he disagrees with what they do or give you he sounds like a im the doctor i know all type and truthfully you know more about your conditions i feel he is one of those docs that don't want to give any meds etc sounds like your old practise is being abit you left so we won't take back also better if mum does port you trust her and with her mostly when port need accessing when you decide in future to do it ior not always look forward to your vids each week you are one of the sweetest caring person who will help anyone no matter how your feeling and how much pain your in your strong and beautiful inside and out xxx

[@Mary-op8hi]

FINALLY someone who appreciates the finer things in life (aka, The Emperor's New Groove)!! I think you definitely made the right call regarding that GP, I mean, it's super unfortunate that your previous GP can no longer see you but with every new tidbit of information you shared about him more and more red flags of increasing size just kept popping into my head to the point where I would be legitimately concerned for your health and safety had you decided to go with him! On a much better note, I think I say this on every vlog but you're just so damn adorable with your crochet bras and sense of humor (it seems we both have The-Office-esque humor (if you haven't watched that show I really think you should remedy that right quick because it matches your kind of humor perfectly))! Please never feel like you have to apologize for a late vlog, or even a missed vlog; we all know how stinking (to use your word) unpredictable chronic illness (especially EDS and Mast Cell, I find) can be. As always, my doggo and I send you our love!!

[@barbh1]

Wonderful video, Christina! Thank you!

[@rachelleeds9804]

Seriously amazed by your crocheting skills! That bra is super impractical- but I feel like it’s one of those few things that are so cool, they don’t need a purpose Also the EDS conference is in Baltimore?!? I might be able to go, this made my night 😃

[@alexb418]

YES for the meet up! I'm really hoping I can go to my first EDS learning conference this year. It all depends on when I see Dr. H and get my cci/ chiari surgery though. Fingers crossed I can make it!

[@Himanshu-yq6bu]

Hi Christina Good to see you happy Sending you a lot of love and a big hug

[@decadentnight]

You're plants are looking beautiful and it's so good to hear from you!

[@darkbluematter1753]

Late or early, always happy to see your vlogs! Looking forward to the story time video you mentioned. 😊

[@hopechappell3629]

Hi Christina I'm a new subscriber and I'm just amazed at what you go thru everyday. Have you ever thought of having your SI JOINTS fused? I had both if mine done and it made a world of difference. I do have some pain from it still but mine would literally pop all the time. I have SI JOINT dysfunction syndrome which I got from a failed S1/L5 AND L4 FUSION. I ended up With MSSA on my spine with abscesses all down my spine. So literally the abscesses were so bad I had no tendons or ligaments left holding my SI JOINTS in place. Even after they took out all of my hardware the abscesses remained and I had 4 different PICC lines in 8 months. I had to give myself antibiotics everyday at home. I hated the vancomycin. Well anyway I'm glad you feel somewhat better today and hey with the new Dr maybe you can teach him a few things he didn't know. I'd give him a chance maybe a couple of appts and if you do t like his plans tell him and if he's from I'm not changing find a new dr. You could always go back to your older Dr until you find one your more comfortable with or ask around about different Drs. Well I'm Hope and if you ever need someone to talk to let me know. Stay strong and positive. Oh how did the t-shirt thing cone oyt?

[@believe_05]

Prayers! ❤✌

[@BeverleyButterfly]

Wow you had an interesting week! At least you looked stylish and you now have a crochet bra so you are set for life hehe your cousin looked amazing in the fashion show!!!

[@TaylaPotayta]

Miss Adventure thanks so much xoxo

[@catherinewilson8896]

Hey Christina, I have been watching your vlogs for a few months now and I find them so interesting :) I am from New Zealand.

[@LecheVitrineUK]

Amarylis flowers several times we had one when I was a child, they are amazing!

[@nettieclouse9750]

It's soooo good to see you! Yesssss Emperors new Groove! Great movie it was the first movie that my hubby and I saw! Our nick names from then on till this day are Sir. Llama and Lady Llama! The llama is the best character in it! Your plants are doing soooo good - "the crazy plant lady"! So glad you got to spend a little time with your dad! Lol when you have crochet all you can crochet... Thanks again for a great video for the week!

[@dawnlaughlin4873]

HUGS to you Christina. YOu have so much going on I would be shocked if you did not have any issues with your emotions!! Prayers for you!!

[@jenng3649]

I have EDS type 3 and live in Annapolis, Maryland. I am hoping to go to the conference and would LOVE to meet up with you. I think I will be going alone (nervous about that) and would love to make new friends ☺️

[@NeonnBalloons]

I'm wondering if you could fit your splints into L/XL sterile gloves. Also, you could always take your mirror glasses off then put new gloves on to continue the procedure.

[@christinadoherty3212]

+Haley Pletcher My nurse brought by some different sizes and types for me to try! 😊

[@Mary-op8hi]

Sidenote: Have you ever looked into using staples instead of stitches for surgeries?? I became a staples-only gal because I don't just react to sutures, I react so hard that my skin starts wearing away and I end up with a gaping hole where the incision used to be (true story). This is not to say that I don't react to staples at all, but at least with those I only get some irritating itchiness and minor-moderate rashes. I just saw that picture of your incision site and it looked inflamed and angry, so I wanted to pass on this information in case it's something you had never thought of/tried before

[@shawnresor498]

Waaa..llama face 😱 Very under rated Disney movie.

[@Sarah.reads.sometimes]

I have a random question but when you’re crocheting, does the yarn ever get super tangled to the point you almost can’t use it anymore without spending lots of time untangling it? This seems to happen a lot when I get down to the ends of the skeins & is super frustrating! I’ve been knitting on looms and am still learning so I was hoping there might be a trick to it lol!

[@emporesszia]

The Emperor's New Groove is totally one of the best movies. My friends and I have watched it so many times we could probably quote the entire movie!

[@mackryan9887]

To keep things sterile while accessing yourself you might be able to use one of those makeup mirrors with a stand that can be angled down onto your sterile field!! Theyre like $8 at target/walmart

[@christinadoherty3212]

+mackenzie ryan I actually have a trifold vanity mirror that im thinking could be my saving grace

[@dawnlaughlin4873]

LOL, I drop things constantly, and even throw them!! haha

[@ecologist_to_be]

I have to have a primary care doctor in my country...convincing them is the only way to get any help! And you can't just go anywhere, you have to choose one in your limited catchment area. Hard work when they think they know everything even though they don't specialise in that particular area!

[@christinadoherty3212]

+Sarah Camley Geez, Im sorry you have to fight so hard for the care that you need! Its truly unfair that those who have the least energy have to spend so much of it fighting to get well 💕💕💕

[@anikabaddeleyrollingbackwa7341]

I was worried yesterday when I normally watch your vlogs.

[@angeknowsit]

Anika Baddeley me too

[@sheilas1283]

Angelica O.H And me!

[@decadentnight]

I was too

[@laureng8rb]

Me too! I even commented on Instagram!

[@penelopepolinsneemeyer4757]

Try using vinegar instead of fabric softener. The fabric still softens, but there’s no scent. I’m so relieved to see you this evening xxxxxxxxxxxx

[@kerrysmiles]

I think you have an addiction to succulents lol🤣

[@lauren3596]

Kerry Sheehan another box of succulents came in the mail today lol

[@kerrysmiles]

Lauren Doherty hahahaaha where is she going to put them all🤣

[@pkendlers]

Christina, did you notice (with the two nor'easters we just had in NE) more pain than usual? My fibro has been awful. :( Looking forward to making an appointment to go back to physical therapy, myself. I hope you find a good primary doctor soon!

[@NatalieWiltshaw]

I love the totoro socks! where did you buy them :o

[@honeypotsandstripes6910]

I live in Delaware, and I'm TOTALLY going to the conference this year! I hope to see you there!

[@christinadoherty3212]

+Honey Pots and Stripes Woot woot!!!🎉

[@honeypotsandstripes6910]

Christina Doherty I've never met someone with EDS before so I know I just HAVE to go! But I don't think I can handle the drive every day so I'm nervous to room alone, I have no idea what to expect! It was reassuring to hear someone else talk about it!

[@MySoCalledLife7]

I hope your doing better

[@EmetTauber]

I would love to do a meetup at the conference. I hope ill be there, I'm planning a tethered cord release around that time but hopefully more in the middle of the month.

[@jessica45qt1]

I'll be at the EDS Baltimore Event see you there

[@agiles6483]

Happy to see you healing and I hope you feel more like yourself soon. LOL on the bra, they were a thing in the 70’s, if you can believe it. I hope you can find a PCP who will respect you, your amazing physical therapist and the specialists whom you trust. Perhaps the PCP you had can take you back through knee surgery and recovery until you can find someone else.

[@chronicinokla]

Hey sweetie it will mess with you. It affects your seritonin. So it really causes angsty mood lol at least it did for me when my doctor I was forced to change to ( my pain Interventionist closed clinic with no notice) decided I didn't need it. I notice I want to cry at drop off hat Too much can cause seritonin syndrome

[@sandramorrow8658]

Oh, here we go again 😋

[@13meli55a]

1 quart of water and a half a cup of salt sounds like a recipe for what I'm supposed to eat and drink in a day :P

[@Jolvie]

Hi Christina, I've been finding your videos super interesting. I was wondering if you spoke about why you needed spinal fusion, and why you needed a feeding tube, in a video before? Since I've seen your videos about those things but I'm not sure if you spoke about the reasons why you needed them. I'd find it interesting to learn about it! You're truly a wonderful person, best wishes on your surgery recovery x

[@sarahchalk3801]

Jolvie She does; check out her “Living with EDS” playlist 😊

[@FunnyFille]

I actually love the bra! It's adorable. You're very talented

[@WackyLisa]

I haven’t been able to brainstorm how to do port and infusion stuff without vision. One reason I’ve decided not to try it unless it might be life saving and not for quality of life

[@jbellel]

heres the deal. that doctor works for you. if he doesn't understand that. you should look for another one that does get that. you have way too much to deal with to put up with someone who doesn't want to properly engage. good luck

[@curtisbemis6640]

Christina your such a beautiful person to find happiness in the hell life has given you . It takes a beautiful heart to find that wish I was as strong as you and had a beautiful heart like you do ,

[@dianeluke1746]

What version of JCS were you watching? Musicals are my best friend. 😊

[@poppycopper1]

Hugs xxx

[@MayimHastings]

Christina, you have such a great heart, I just love the 💩 out of you!!!

[@christinadoherty3212]

+Alice H. 😂 Well thank you! Nicest use of that emoji I have ever seen

[@randomfangirl12345]

Seems like a lot of negatives that could end badly for you with that new doctor 😕

[@DahliaVonHellion]

Baaad vibes coming from that Dr. one of my biggest problems from doctors have been under treating me and under prescribing medications and not seeming to understand that my problems are chronic and taking me off medications that are helping me is a stupid idea because some people just don’t function right naturally and their system needs some help. Medication has been demonised so much, obviously the less you can take the better, but quality of life is far more important than just getting the number of pills down for the sake of it. And many tend to think patients are just clueless, but when you have EDS YOU KNOW what you need, what’s going on, and take a more active role in your treatment. And not knowing about mast cell is not good! You’ve made it so far and fought so hard for the level of treatment you need and he doesn’t sound like he’s going to be good in that aspect. Also I’m a tattoo artist (so I wear nitrile gloves a lot lol!) and ring splints work okay under them :) kinda awkward looking, but it works lol

[@christinadoherty3212]

+Dahlia Von Hellion Yeah... Im in the market for a different doctor. I just don’t need another Dr to fight for

[@DahliaVonHellion]

Christina Doherty aw you replied 😍 yeah I wrote this before I’d watched the end, oops 😂😭 I’m glad you decided not to go with him, such a bummer your other doctor wouldn’t take you back though 😑 I hope you find the perfect fit soon!! 💖

[@elizabethb1096]

Not trying to be intrusive but I know Brigham Women’s has a genetic clinic and have specialized doctors and have an EDS specialist or something...

[@nessbailey7931]

Where is Trish located? I live in Maine, and all of my previous PTs have sucked and don’t understand that it’s not just strengthening with me, I’m also constantly injured.

[@sarahchalk3801]

Cora Bailey Rhode Island.

[@NJSMKMMS]

Hi Christina, Just wondering is there a name for or dicription of that nasal intubation method your Dr said he was going to try on you. My neck isn't fused, but very unstable and damaged and the last time I was intubated I woke up, no feeling or movement down my left hand side. That was about 10

[@NJSMKMMS]

years ago. Since then I have had a few different MRI's and there has been a ton more damage and other dieases that have had an effect on my neck. I have need for several surgies 1 that is urgent but I am terrified that they will do serious and permanent damage, if I just go in and trust them to be

[@NJSMKMMS]

careful. Of course I have spoken to Anesthesiologists re my concern but I don't trust they are taking me seriously. I do have the name of an apparently Zebra savy Neursurgion in another state that I will eventually see but I need this other matter, that I am told is urgent but should be straight

[@NJSMKMMS]

forward. Iam worried about the surgery because it is about 6 months since I was told I needed it done urgently.(it may invove cancer so thats why I am a bit freaked out) Ofcourse there are still the issues of allergies and not having any big gun pain killers I can use for post op pain but this is

[@NJSMKMMS]

the first cab off the rank.......well atleast I think so, right now.

[@kellymyers7506]

You’re leggings are so cute!! Zebra power!!!

[@FarisJaclyn]

✨💜

[@TaylaPotayta]

Gerard Butler ❤️❤️❤️

[@KN-vo7ff]

Does EDS cause the voice crackle you have when speaking? I ask this seriously because I have developed a similar voice crackle and the ENT & speech pathologist said my vocal cords look fine, my throat is not sore. I do have GERD, which is why I went to the ENT thinking maybe it was causing polyps or inflammation on my vocal chords but it is not. The only thing I can think of is that I have mild EDS - so I am wondering if you have ever been told that it causes that scratchy throat/voice crackling sound. I absolutely hate it on myself!

[@christinadoherty3212]

+she's that girl I suppose it could cause things to be a bit “floppy” in there. It can definitely affect the structure of the esophagus and airways as well as the cervical spine. But it could be unrelated. In my case my voice has gotten more crackly each time I have had surgery due to the intubation and I also have a lot of issues with my esophagus and some with the palate and trachea. So who really knows.

[@4thestump]

Most likely you were given the steroid Prednisone (Medrol Dose Pak) after surgery to speed healing. That will make you feel weird for a few weeks also when combined with Opiates?

[@ellibean5937]

stump Prednisone is a corticosteroid and those inhibit healing, not speed it. Though they do reduce inflammation and are used for overactive immune system problems like with mast cell. And yeah they sure do make you feel weird if you're not used to them.

[@jenng3649]

❤️🦓

[@savyy4minnie]

Where did you get your finger splints??

[@christinadoherty3212]

+Savannah Bailey They are from “The Silver Ring Splint Company” 😊

[@savyy4minnie]

Christina Doherty thank you!

[@mackenziepowell4199]

At first you were talking about that doctor and I was like well I had I doctor but he came around and then you said doesn't understand mast cell I was like heck no! Yours is kinda bad so um maybe not then you said he didn't seem to want to talk to your pt that just made me kinda angry because you deserve the best

[@masonplank6627]

Look into Dr. Jian Shen he is just absolutely incredible. He's like an orthopedic genius.

[@Idellle]

I'm new, does she have a work exept youtube?

[@catherinelablanc7396]

NO TOUCHY

[@meganer12]

Completely understandable that you don’t want to have to argue with someone who knows less about your condition than you do. I frequently find that male doctors do have that know-it-all attitude and I’ve found it really annoying and even changed doctors because of it.

[@DinosaursGoRawrMr]

I don't want another primary care doctor. 😂 and my issues are no where near your issues. I've just known her since I was a teenager and followed her when she transferred to the main hospital. I don't want to go through testing and explain my health. Besides I'm moving 3 hours away and don't want another doctor.

[@christinadoherty3212]

+Hapezibah Skacy Its so hard having to start over with a new doctor 💗💗💗💗 Hang in there!

[@NorseButterfly]

Hey,I just noticed your nose curved exactly the opposite from mine🤣 But for real... the youth of today are screaming for safety. They are the ones who will be our leaders in the near future, and people better listen to them.

[@Pat_Kole]

I didn't really understand she shape of the bra. Perhaps you can show it over a contrasting shirt?

[@dawnlaughlin4873]

one more comment, I should not leave them until I watched the whole thihng....anyway, the bra looks like a coconut bra - wear it in Hawaii!!

[@analarson2920]

Christina, whenever I watch your vlogs, the word that comes to me is amazing, you are amazing, thanks for sharing and being so brave and courageous, you are a blessing and I pray for you and yours daily, if you ever feel alone try the serenity prayer, I do it daily-God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. I offer it up each morning before I get out of bed, never knowing what the day will bring or not bring and all other chronic illness warriors like yourself. So stay strong, because you are, you are awesome. I hope I wrote that well enough that you get my sincere thoughts on you and your awesomeness. As a mom, I feel you can never compliment enough, so I hope this was okay with you. I have 4 kids, the oldest almost 30 and the youngest just 17. Did you know that doctors use various lenses to do surgery so ask the nurse for ideas, or other professionals on this vision issue and lens ideas. Sorry for this dumb question, I know you have tried various foods and take care with what you do, but have you 1- ever had a gut healing diet with medical support and if so do you have a video on that? If you have done it but don't have a video can you share it? 2- Personal experience- stay away from know it alls, especially if he lacks the expertise, you should really be happy with your doctors even if not perfect but be happy, you go through enough, they should also be available, if you want someone to help you get objective points of view and ideas then get a life coach that has lots of experience with folks with disabilities, just a thought or a second opinion from a specialist. They are not medical professionals but should be a great source to discuss and bounce around ideas that you can then discuss with your doctors. Also look into family friendly counselors it can help with anxiety, you do a lot and go through a lot, also any physical activity they let you do please try to stay on it when you can with relaxing music, meditating can help too. Try many things until you get what works for you. Hoping for better days and better ways, I got allergy tested on chemicals and that helped to get rid of a lot of things. So glad you have good PT folks, see if your insurance company can help you find another group that can help you. Loved the fast forward fashion show and you looked great in your dress. Blessings.

[@raincoathaveli]

I am not trying to knock a doctor I have never met, but this doc does not sound like a good fit.

[@loiscassels8966]

Eugenio I agree. Ditch him!