Vlogging with EDS: My Range of Motion, Genetics, and Med Mixups |Week 4
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- Опубліковано 2 гру 2016
- Thanks for coming along for the week with me! Its
Curious about my range of motion after cervical spinal fusion? Explanation begins at 2:44
Demonstration begins at 5:12
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
My Etsy Shop: www.etsy.com/shop/ChristinaPa...
My Redbubble: www.redbubble.com/people/chris...
My Medical Facebook: LoveOnChrist...
My Personal Facebook: / christina.doherty.315
My Email: Watercolormeimpressed@gmail.com
Ukulele Song: Somewhere that's Green- Little Shop of Horrors (Please don't sue me)
FINALLY got my EDS Type 3 (hypermobility type) diagnosis after an entire life of random “pop outs” and chronic pain. I have had my POTS and MCAS for about 6 months now and finally got this one! I have been binging your videos to have a new “friend”
OMG you have the most beautiful voice! Make more singing videos if you can! Good vibes are send your way!
Just watching this video now in 2019! OMG beautiful singing voice, can you sing again??
Hi Christina! We exchanged comments on Nikki Phillippi's channel. Last night I finished binge watching ALL of your videos and I have to let you know how much I enjoy and appreciate your channel. You are so sweet, genuine, talented, knowledgable, beautiful inside and out. I know it takes a lot of time and effort for you to create these videos, and you are doing such a great job! Also, I saw your name on Facebook because we are in the same Dysautonomia group. I'm pretty sure you were at the meet & greet in August at Panera in Plainville sitting across the table from me! I hope to see you again at a future meet up, but in the meantime I'll be following your channel. Sending lots of zebra love ❤️
+Eva Shea Hey! Yes, I totally remember you from Nikkis video! Im glad you liked my videos :) Thanks for watching them! Funnily enough I wasn't at that meetup but would absolutely love to participate in one someday soon. It would be lovely to meet! ❤️
Christina Doherty oh I must have mixed you up with another zebra 😋
Hello new "EDS" friend!! I came across you on Nikki P's channel! It's SO nice to see someone bringing EDS to light!!!!
+Melissa Thomas Hey! Welcome!
You actually sort of get three "zebras" when I watch your videos! I have an identical twin with EDS and my 13 year old daughter has EDS as well.
I'm itching my nose like a maniac in the back seat😂
+Lauren Doherty 😂😂😂 I didn't even notice that!
My pain medicine
makes my nose itch :)
omg you have the most beautiful voice!! that literally gave me goosebumps!
I have eds hypermobility type 3, POTS, tethered cord, chairi malformation, scoliosis, high functioning autism, ptsd, sensory processing disorder, dyslexia, chronic pain , depression, anxiety, etc. I'm a zebra warrior! and love the video you made!!
Thank you :) You ARE a warrior!
love the jewelry, I wish I could make stuff like that.
My genetics apt is next month so hearing about yours helped me relax a little about mine.
+Dawn Keith Avon Its really quite easy once you get the hang of it. I thought it would be harder, but now that I have learned its like second nature. Im glad you are feeling a bit more relaxed, It can be so nerve wracking waiting for an appointment. Especially if theres a long wait. Sometimes the anticipation is the worst part. Best of luck!
wow earlie videos !!! i love watc hing your channel christina, your so awsome glad i found it !!!
You are so beautiful and you have such a beautiful voice! I enjoyed the song... it was very entertaining. 😊 I'm so sorry you had such a bad night and day. Praying for you... ❤
+Whit U. Forever Thank you so much! That actually means the world to me. I don't even song in front of friends, so to include that in a video was a bit nerve wracking
Christina Doherty We'll, you have a great personality and I think you should keep it up, if it brings you joy, of course. You sure made me smile!
Christina Doherty You have a lovely voice, Christina!
Crazy beyond beautiful.
+Christopher Youse Thank you very much! 😊
That sweater at the end with the holes was so cute where did you get it!
I enjoy your vlogs
Great vlog! I hope that your symptoms from the med switch up didn't last too long. I really love the sweater that you are wearing at the end. Could you tell me who makes it?
Hey! Thank you so much for your videos! I had to come home from college because of EDS and POTS and was wondering if you have tips for things to do during the day that are fun, but don't take up too much energy. Also, I loved the song! Little shop of horrors is amazing!!
+idon'tknowwhati'mdoing Hey! Thanks for watching them! Im sorry you had to leave school, I can totally relate! Im in the same boat. I kind of collect hobbies lol. It depends on whatever I can do that day. I do a lot of art and painting, but when I can't get out of bed I have been making some jewelry. On days where my eyes are good I love to read and practice instruments and stuff. If its a not so great of a day audiobooks or watching a musical or something is nice. I hope that soon I will be able to go for walks during the day or something just to get out and get some fresh air.
I love Little Shop of Horrors!! Sorry you had a mix up. Those are the worst! A few times I have forgot to take my morning or evening medications and it messes with you for days. I see my Genetisist for the first time in a year and half tomorrow, and I am for sure going to ask about tethered cord syndrome. I have EDS type 3, and get really bad headaches in the back of my skull and down my neck. No fun!
+Chelsie Wise Same omg! Totally obsessed right now! TC definitely sounds like a reasonable thing to bring up. Do you have Chiari as well? You should probably be screened for that if you haven't been already. Those headaches could be chiari related and its good to cover all the bases ❤
I have had several MRI's a year, for about 6 years, and they have not seen any signs of Chiari. I spoke with him quite a long time, and he believes my headaches are beause of the tension in my neck and jaw. So now instead of just getting PT for my back/hip/spine, I now am going to get it for my neck and shoulders too. Fun times. Keep smiling girl!
the silver pendant should totally go on the silver chain!
+Dana Max Thats what I was thinking too :)
Hi! I'm pretty new to your channel. What you said about your younger sister is the same as me and mine. I don't score very high on the beighton score but my younger sister does, she is 5 years younger. But she doesn't have PoTS or gastroparesis or other complications like I do. (Really hoping she doesn't develop them) But how strange is that. Maybe it's a bit more common with zebra siblings then I thought.
Anyways hope your week is going well,
+Ellen Berry-McIntosh It really is so weird! I know so many families who have multiple Zebra kids who are so all over the map. Its interesting to see how those genes express themselves in such different ways.
Hi again Christina, you were describing your right sided head and neck symptoms it sounded like my Hemiplegic Migraines, except mine are on the left, not right. I had another friend who had Joint Hypermobility Syndrome that had them too but after they started to investigate her for Mito they called
them stroke like episodes, at that time lots of her POTSy friends said they had the same or very similar symptoms, but mostly on the left hand side. They might have something about it on the Dinet forums
+NJSMKMMS Very very interesting! Thank you for all of that information. I will look into it. For now I am thinking it has to do with my stent as I never had this specific pain before it, but maybe that triggered something else. Im keeping an open mind about it and seeing if it improves
Ah your robe! I think we're matching, topshop? It is sooo cosy
+Vicky R Yes! Twins! Im totally in love with it 😍 I was just trying it on for now, we ordered it as a Christmas gift for me. I already miss it. So now I absolutely can't wait for Christmas!
u can sing!!
Hello! Before your diagnoses did you have of joint cracking, popping, along with bad cervical pain? I've had a C1, C2 fusion but still looking for a diagnoses.
I have definitely always been kinda...noisy. lol We joke that I would make a pretty bad ninja as I have something crack with just about every step. And yes I did have a lot of head/upper neck pain. Since EDS is something I have had all my life it makes a lot of sense looking back with the full picture. I hope you can get some answers!
Christina Doherty Thank you!
I have a sleeping disorder and am well familiar with accidental naps haha. Only mine can be up to 13 hours long!
I can sympathise with the confusion of not knowing what day it is!
+Nozyspy Wow! Now that is a nap! I don’t doubt it is super confusing waking up from one of those haha
I've found with the score thing my main joints are shoulders, hips, ankles, neck, jaw etc which they always try and say can't be hypermobility as not the "right joints" lol not a fan of that score in all honesty lol
+Sarah Smith Yup! That's exactly me! My hips, spine, knee, and jaw are my worst offenders. Maybe we need a new scale
Here here! I agree 1000% with you guys -- it's as if some physicians see the scale & "forget" that the other joints can be just as unstable & problematic. Sometimes more problematic, depending! Hahah
My wrists, shoulders, & ankles are my three worst for hypermobility/instability, other than a couple of the usual suspects [knees, fingers].
I get a lot of problems in the same joints as well. Unfortunately (or maybe fortunately? I'm not sure) my 'beighton scale' joints can give me a lot of trouble as well, so I still get a beighton score of 9. I'm just instable all over. Which sucks because now my jaw is dislocating (right tmj) and subluxating (left tmj, though on rare occasions both sides will dislocate completely, soooo scary!) pretty much every time I open my mouth. It's so bad now that I talk strangely because of it, and eating is very difficult. And I've already tried everything and it's not working so I need to get surgery on my jaw in the very near future.
That's so weird that you and your sister have the opposite symptoms! And yikes, med swaps sure are scary. Did the weird one-sided headaches go away, or are they still happening?
+K-Wo Isn't it? Lol The headaches are still happening unfortunately, but heat it helping so I'm thinking its muscular
Are you unable to swallow at all? What do you do with your saliva and do you sometimes chew food and spit it out, just for taste?
+glumpfi hfefef (glumpf) I can't really swallow much. I only do water by mouth, that way if I inhale some its not too dangerous. Water and saliva do still get stuck, it takes me maybe 4-5 swallows sometimes for it to go down. It kinda just sits in my throat lol ,weird, I know! I really don't ever put anything in my mouth, my allergies are so sensitive that most things would probably make my tongue swell. Even my toothpaste makes my mouth tingle. I tried a mint a couple months ago and it was a disaster with mouth/throat/stomach burning. Its just not worth it.
Hi Christina hope you had a good Christmas, I was just wondering was all your cervical fusion because of your tethered cord and Chiari problems or from having a super hypermobile neck and the damage that does. My youngest son has a super hypermobile neck amd I did too but of course now it is full of
DISH, Osteo and Rheumatoid arthritis, Ankylosing Spondylitis, herniated ruptured and desicated discs, cord compression and so on. My Rhumy says I have the neck of an 80 year old, so it must be pretty bad. I have never had any surgery on it because I'm a surgeryaphobe. Any way like you I have an
extremely limited range of motion. My Dr has warned me that, even though I have not driven for about 10 years, because a combination of the drugs I take, pain and brain fog, I have always kept my drivers licence up to date. My Dr has warned me that my neck may be the cause of me not being allowed to
drive any more, fairly soon. Of course I understand but because I have always been so independant, being forced to give that part of me up was not something I wanted to contemplate. Do you have a drivers licence? How do you feel about your situation?
+NJSMKMMS Hi, Im really sorry to hear that you and your son are going through all of this. The fusions I have had have really been because of a huge combination of factors (which obviously you are familiar with). The chiari and tethered cord played a role in everything, but it really came down to my spine being very unstable. I make the distinction between hyper mobile and unstable because they are two different things even though they often go together. The skull was sunken and sliding and the vertebrae were twisting and sliding out of place too. The vertebrae and the discs were compressing and pulling the spinal cord and nerves. (Sounds like things you likely already know a lot about) I sincerely hope your son is just hyper mobile, its possible that he won't have these issues. But definitely keep an eye on it and try not to let him bend it too far in any particular direction. Have you ever seen a neurosurgeon just for an opinion? I can absolutely understand being afraid of surgery
Thanks for your reply, hope you are well. Sorry for taking so long to send a reply. I am still getting over all the Christmas and new year festivities, visitors, increase in fatigue and increase in pain. I have also had to come off one of my antirhuematics which has also increased my swelling
You must set off alarms at the air port
All the alarms!!! 😂
I'm a fellow zebra and I was wondering what diagnostic tests and how long it took for you to get diagnosed with gastroparisis? I'm looking for answers with my GI issues and am starting my search for answers.
Hello zebra friend! :) I do remember that I had a gastric emptying study but I can't remember if that was super definitive. I tend to go through flares of GP, especially when I get run down or have other issues going on. When it came down to it they placed my G tube more for my swallowing and allergy issues, but could see my motility was poor overall when we did the barium swallow for the swallowing and when they were in there placing the tube. I hope you can get some answers soon! GI issues can be some of the most debilitating.
thanks :) I love watching your vlogs!
I've had that happen to me before with the med mix ups
Not recommended**
+Tamber Grable :P 0 our of 10, would not recommend lol
Hey how do i apply to go to the eds conference this coning year
Coming* the one you went to
And how much were your thumb splints? if you dont mind my asking...
I'm just curious, why keep replacing your picc line instead of getting a port? I would be afraid of snagging a picc line on everything.
+judesmum1 This is actually me very first long term PICC. I have had them for hospital stays but this was my first take-home. I have had it in since June and its still going strong (knock on wood). We wanted to male sure that the IV hydration was what I needed and that it would be a long term thing before we went the port route. When this PICC poops out on my Im planning to go for the port. I would do anything to go swimming!
+judesmum1 Snd as for snagging, it hasn't been that big of a deal. I have been running my fluids overnight lately which has been really nice. I don't have to worry about it as much. And them I wrap it up and tuck it up in place when not in use. It even has a little lock thing that sticks to my arm and locks it in place. That way if I snagged it on something it wouldn't pull it out (unless its like a speeding truck or something)
The effects of your meds mixup sound miserable. I completely feel your pain with the TMJ pain and MCAD. I finally got testing done on Friday for MCAD, and I'm headed to Dallas at the end of December for Dysautomnia/POTS testing to see what kind I have. My dentist appointment can't come soon enough. You mentioned your pain and I was wondering what you do to compensate for it? The reason I ask is I find my fatigue is correlated to my pain occasionally. Anyhow, I hope your trip to Virginia goes well! Safe travels!
Hey Daniel, good to hear from ya! Sorry you have so much going on, I can relate. Im kinda trying to figure out pain management right now as well. Up until now I haven't really taken anything. I mostly use heat/ice, baths, PT, meditation, essential oils, and TENS. I tend to react to most pain meds or they really knock me out. But I may be trying tylenol (again) and maybe amitryptaline. Im wondering if I could be more productive if my pain was better controlled, but Im nervous about trying anything. Im sure you totally understand. My dentist really wants to try nerve blocks but that makes me super uneasy with my history with numbing agents.
Christina Doherty Your comment when you were in Michael's made laugh 😂. Anyway I've been in the same boat as you regarding pain. I'd say that's the worst symptom for me and honestly nothing helps that much. Tylenol and ibuprofen only cut it by a fraction and so I don't usually take them. Muscle relaxants didn't help me much either. So at this point I'm considering narcotics unless my geneticist has a better idea when I visit her in 2 months. I share your thoughts in being wary of pain medication, but I'd like to give it a shot. It's definitely a very personal decision. I hope you find something that helps :)
Just got diagnosed with EDS two days ago. I feel like I just wanna give up.
+Fiona P Welcome to the zebra herd. I am so very sorry you are having to go through all this. Please please don't give up! Remember that a diagnosis is just a word. Its just an explanation for everything that was already going on. A diagnosis is power. Don't let it define you. You can still have an amazing and fulfilling life, I promise. You will never be alone in this. I will always be here for you and so will the rest of this amazing herd. We zebras stick together ❤️
OMG.....what is all that stuff you take in the shower with you lol?
i get those accidental naps all the time
+Olwyn Oduinn ❤️
Jeeeez you have a lot of crazy things in your neck. Whoa
i pray that u dont have veds becuase i have it and its terrible wish it apon noone !!!
Great vlog! I hope that your symptoms from the med switch up didn't last too long. I really love the sweater that you are wearing at the end. Could you tell me who makes it?
Great vlog! I hope that your symptoms from the med switch up didn't last too long. I really love the sweater that you are wearing at the end. Could you tell me who makes it?