Living with EDS: A Day In My Life
ฝัง
- เผยแพร่เมื่อ 21 มิ.ย. 2016
- Ever wondered what I get up to on an average day? Well know you know! Thanks for spending the day with me! Let me know in the comments if you like this style of video, and maybe I will make more like it.
Go check out my friend Emily to see what her days look like with Type 1 Diabetes and Endometriosis/Adhesions: • Video
Where to find me:
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
im glad that you have the ability to take care of yourself by yourself
Me too. Although I do still live with my parents and they graciously do a lot for me. At this point I am pretty capable of doing most things myself, but their help often allows me to have the energy to do some other things I enjoy instead of spending all my energy on my self care.
@@christinadoherty3212 .how are you feeling now
You are a beautiful young woman with an amazing attitude! I have EDS also but on a much easier scale than you have. Keep up the good work and the beautiful smile!
It's good that you're doing this so ppl can understand EDS. It's super important. right on.
You are so strong! I have brain surgery coming up and I really look up to you and know I can get through things like this, because you've gotten through so much yourself!
Best of luck on your surgery! Keep us posted. In my opinion the worst part of surgery is the waiting beforehand. Im sure everything will go wonderfully. I hope you experience tremendous symptom relief
Wonderful video, thank you for taking the time and energy to make it. We have a lot in common medically and you're an inspiration to me.
+Queer Skies Thank YOU for watching!
This was just a really soothing video to kinda walk through your day with you. Your voice is so soft and you seem so kind and its all just v pleasant!
Thank you so much for making these videos! I love that you said "know that it's okay, to not be okay" because that is something that is the hardest for me and I'm so grateful to see your struggles and how raw you are. It makes you very relatable. I never feel comfortable wearing my neck brace but seeing how brave you are to wear it and to just do what your body needs is inspiring so thank you.
+McKayla Jo Thank YOU so much! Its definitely something that I have had to work on and am still working on.
Thank you for this video. It wasn't boring, it was extremely informative. ❤ you are an absolute sweetie. Much love and prayers.
+Elly Pierce Thank you for the sweet comment
This video was the one that brought me to your channel soon after my EDS diagnosis. You've helped me so much along this road!
Thank you Christina. This is my favourite video since I’ve signed up to your channel (btw it's not boring at all). I always watch this video when I'm feeling sad, and I always feel so much better afterwards because there's such a positive undertone in it. I love the music you added! My day looks like yours if I have physical therapy or a doctor appointment, but doing something is better than sitting home alone with my thoughts. Sometimes my sister takes me by car, more often I have to go by train (this is exhausting and takes very long). (Sorry if I make mistakes, I am from Germany, and I’ve never been to the US or a country where English is spoken)
I’ve just watched this and you’ve said you’re excited about having over 100 subscribers, and now you have nearly 20k. What an incredible thing you’ve done.
I’ve recently been getting to know a lovely woman with EDS, who I have more in common with possibly than anyone else I’ve ever known. I’m intrigued to date so this video is incredibly helpful and informative.
Thank you.
So I've spent the morning on your channel, and up until this video I don't think I fully grasped the severity and seriousness of EDS because your attitude is so upbeat and amazing. You're an inspiration, not only to other EDS sufferers, but to anyone who feels and/or acts like a victim of their illness/condition, etc. Seriously, you give off exactly 0.0% "poor me" vibes, which is super cool. Stay strong, and keep smiling. :)
+LunahSea Thank you! Yes unfortunately EDS is so much more than just being bendy Even most doctors can't seem to grasp the systemic nature of the condition. It affects everything
+Christina Doherty You're very welcome. Well, you're doing a fantastic job of spreading awareness about EDS. Hopefully, as more patients are correctly diagnosed with EDS, and more people bring attention to it, doctors will see that more research is needed. A condition that affects the entire body in so many ways should be a priority for the medical community.
oh my gosh I love your Totoro slippers!!
Thank you! Me too! Although unfortunately so does my dog lol. She loves to attack my feet when I wear them
Christina Doherty I had super Mario mushroom ones and my dog was obsessed with them too haha
Wow, thank you so much for sharing! I know that by doing so, you are and will continue to help others out there much more than you may ever know. Keep moving forward each day with such strength and positivity, you are an inspiration to many! Blessings and hugs to you:)
you are amazing! I really hope your channel continues to gain popularity, I think it is so important for us to learn about what it's like to walk in someone else's shoes and to learn to be more supportive and understanding to each other. Keep doing what you're doing!
+Alyse Andrews Thank you so much! 😘
I started watching your videos yesterday and I love what you stand for. I do not have EDS but my half sisters father passed away from it. He had vascular type and now my sister has a 50% chance of having it as well.
I connect with you most though because I have hypermobility syndrome. I dislocate my joints, I have fragile bones and have been this way my whole life. The precautions you take suck, but what you're going through is so much more than all of that. The fact you do it with such grace makes me admire you so much. I hope for the best for you, and keep kicking EDS' butt!
+Jennifer Gyoba Thanks girl! So sorry to hear about your condition and your family. I sincerely hope your sister is spared that. ❤
Just rewatched this video and you made such progress! I feel now you are much more confident and you have a strong and positive and pragmatic personality. Now I hope your leg gets better soon and I pray for you... best wishes with love, Cosima
Thank you for making videos. I hope you continue to share your story.
What a wonderful mother you have. Just found your channel and am glad I did. You are such a brave soul to open yourself up to the world.
+mcg267 Thank you! Yes my mom is fantastic! ❤ Both my parents are. They both work full time and yet still somehow find the time to haul my to and from endless appointments lol
You are a warrior and I'm so grateful that you're raising awareness about EDS.
+Gabrielle Carolina Thank you so much!
I just watched a few of your videos&i have to say you are so very strong & inspiring ! I live with chronic illnesses too & it's so nice to see other peoples stories & not feel alone & be inspired by others like yourself. I admire your sweet positive attitude about all that you go through... you go girl!💪☺👍 Keep fighting & showing that pretty smile of yours...&that HAIR!😉
+Emily Charmley Aw thanks so much girl! It really makes all the difference to find other people who are going through similar things. The internet is such a great place for that! Keep fighting
You are so incredibly humble and strong 💗
Thank you
I think that’s so lovely & Beautiful that you were so grateful for the 100 subscribers: you are much loved. You are also much Missed but please take the time you need. It Took me right back saying a video from three years ago... Big gentle hug.
Hello, thank you for making this video. I was diagnosed with EDS very recently, but I have known for a long time that I have it. I don't have the secondary conditions of POTS or the mast cell issues you have, and I am thankful for that. You seem so upbeat in your videos, like you have come to terms with everything and you have learned to deal with it. It took me right at about 10 years to be diagnosed, which I hear is pretty average, and I'm still dealing with the diagnosis and the fact that this is never going to go away. It's scary because of my financial situation and I have a child, so I am hoping and praying that he doesn't develop symptoms. Anyway, I think you're a beautiful and strong person, and your sweet demeanor is encouraging. I hope the responses on here are encouraging to you. :)
Thank you so much! Diagnosis is a such a process! And I think a lot of it starts at the actual diagnosis. Its definitely a grieving process
I have been watching your videos all afternoon.
I can relate a little bit, I have hypermobility, and my right shoulder is the worst, as I've had 7 subluxations, a full dislocation (that I know of, the very well could have been some in my sleep that slid back in on its own) and I now have injured my shoulder again, most likely tearing my bicep tendon. My knee caps also like to sublux whenever they feel like it. There's an entire shelf in my house that is dedicated to slings/ shoulder immobilizers, and knee braces.
You're so positive, and uplifting, and I have been really enjoying watching!
Thank you for sharing your life with us. You're such an inspirational young lady.
Stay safe. God Bless you.
love you! I want to do video's as well, but I am scared to try. But be waching you, I am going to give it a go some time. much love from the netherlands xxx
You have such a great attitude. I have had chronic pain and joint issues for years. My issues started when I was 10 years old. It took 6 years and a couple of surgeries before I was diagnosed with Benign Joint Hypermobility Syndrome which is an interchangable term for EDS Hypermobility Type III. I am now 52 years old and my symptoms have changes and progressed over the years. I don't have the same set of issues as you, but we do have a lot in common. I feel so fortunate to have this type of EDS since my organs are less severely affected. For example instead of having mitral valve prolapse I only have valve regurgitation. I'm truly in awe of your outlook and strength. This is a challenging disorder to say the least. Stay strong sweet girl. 🌺👍🌞
+Nannette Miotto Thanks for the sweet comment! Sorry you are dealing with hypermobility as well, im so glad that it has spared you some of the more serious complications ❤
You're such a beautiful person omg it makes me happy that theres still people on earth that are like you 💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕
+Vane “NO” X Aww why thank you! 😘
I loved this video!!! I can totally relate. Thank you for sharing your day with us Christina!!!
Thank you so much! I loved making it
Thank you for sharing this! You honestly seem so sweet and I look forward to watching more of your videos. I was just diagnosed with EDS this week and even though I suspected I had it I'm still trying to figure out what this means and find the help I need. Especially since my condition keeps getting worse. Thankfully I start PT in a few days and from my initial appointment I can already tell my therapist is great.
You've inspired me to work more on my channel, so maybe I'll make a video about my health soon, too.
I would love to see watch your videos :)
I've never heard of this illness before and your video just popped up in my suggested. Is there a video of yours you can recommend that gives me the basic run down? I'm also suffering from a chronic illness but not at all anywhere near as severe as yours, it's just endometriosis and it affects my schooling and friendships a lot but seeing your positivity and perseverance makes me feel grateful for what I have. You are an amazing person ❤
Of course, here is my very first video lol It makes me cringe a bit but it gives you the full rundown on EDS :) th-cam.com/video/fF44HaV9YAM/w-d-xo.html
This was incredible. I have EDS. Nowhere near to the extent you do. But I also have narcolepsy with cataplexy which complicates things. I loved this video and the one explaining your G-tube. You are such a bright upbeat and positive person. You've been through so much as it appears and from some of the things you've mentioned about being so sick a year ago from this video. What a day. People just do not realize how much it takes to just get through it all and the new normal we all have to face when we really get bowled over by a chronic illness, and EDS sure takes over our lives. I was a nurse for 10 years and was the one fixing, flushing and priming feeding tubes along with placing the NG tubes. Now it's looking like I'll be getting one for myself. I agree with your video. I am bloated far beyond words. I look like I'm ready to deliver. I'm throwing up my meds and waking up with bile coming through my sinuses and out my nose and mouth. It's awful and I have Medicaid and the GI doctor keeps rescheduling my consult after they saw me for the bloating a year ago and sent me home with a SIBO test kit. I'm so ready for the tube. I honestly can't take this anymore. I really look 9 months pregnant. And I feel awful. Anyway, I hope you do more videos. I really appreciate your healthy attitude and your uplifting spirit. Don't let this take you down. I don't think k it will. You seem to be through the worst of it (hopefully) and you're doing great in therapy so keep that beautiful chin up. I need to take my own advice. I'm mostly just knocked down and tired and in pain, not feeling well. So far I don't have any dysautonomia or dislocations, only subluxatiins and chronic pain and fatigue. A 7 on the Beighton Scale at the age of 43. My social life is made up of support groups on Facebook. Pretty lame but it's something. Take care sweetheart. You're on the right path. Your strength and courage, along with that chipper attitude will take you so far! It already has! Look how far you've come!! Thank you for your videos. I'm hooked.
Have they tried you on Mestinon to treat the gastroparesis and intestinal motility issues? Researchers have found that old drug to be a new treatment for EDS digestive motility issues, and it also helps to treat POTS and dysautonomia. I have hEDS and just recently started Mestinon, and it's an absolute miracle!
You have such a beautiful spirit. A real inspiration.
+Viviana belly dance Coach Thank you so very much!
Another great video! This was your best one so far, imho. Four stars!!!!
Thank you Angela! I think this is my favorite one so far as well :)
I love your positivity
You're an amazing person and so strong
+Queen B Thank you! ❤️
i don't have EDS but i've come from different videos about it and it just makes me realise how much you guys go through and how strong you all are. you guys are amazing oh my goodness, i wish you well :)
+Lauren Andy Aww thank you so much! That is such a lovely comment. Thank you for watching my video. It means so much to me that you want to learn about EDS even though you don't have it . I wish you well as well!
Thank you for sharing your story
Thanks for sharing :) I have EDS & co-morbid stuff like you and this video was very relatable :)
Thank you for watching! Im glad you found it relatable
That’s my physical therapy office too! They are the best ❤️ thanks for sharing your journey ❤
Thanks for the video. It may seem boring but, for someone who goes through similar things, it's so empowering to see you're not alone. I have friends with EDS so I know intellectually that it's not just me, but it's different to see, y'know?
absolutely love your channel, thank you for being so inspirational to us all:)
(also, not boring at all)
Thank you! Hahah I strive to be "not boring." Its always great to meet another zebra :)
Such a strong girl you are. Love you!
Thank you
I know it takes a lot to talk about your disabilities and the struggles you have to face each and every day. I think these types of videos are a wonderful form of encouragement and education to help many people with and without EDS. I myself have different disabilities and some of them I have had from birth and some I developed after birth. I understand what it is like to go to the doctor and they give me a test and they come back with the verdict that everything is "Normal" even know I still have gone through pain and have had many problems. I wish your and many videos like your videos talking about chronic illness were around when I was in my 20's when I started having problems walking and when I had many family and friends that never supported me and always just kept saying "Get exercise and walk like a Normal Person"? I had a very limited group of people that really believed me and the struggles I have had I believe your videos help show that we as people are not truly alone. It may effect us each differently but our lives are effected. I have watched Chronically Jaquie's videos as well and a few others.
God Bless You.
Great channel. I look forward to each episode. You are a beautiful inspiration to all.
+Alison Pascoe Thank you! ❤️
Glad I found you! I too have EDS, but currently just have a lot of subluxating (sp?), as well as degenerative disc disease, a herniated disc, and a spinal cord tumor. I JUST started doing vlogs myself, because I was just put on a 12 week medical leave, because I can no longer do my job :-( But, I want to make the most of it. I'll be checking out the rest of your vids!
Im so glad you found me too! I will definitely be checking out your vlogs!
Finally I had time to check out your videos after you messaged me on Instagram. I am impressed! I absolutely love the editing and it was really interesting to see a day in the life of an EDS patient. I have fibro and cfs. It's always great to relate to other spoonies but every illness is still very different. Subscribing now x
Thank you so much! <3 I think really every spoonie is so different. My day with EDS is probably totally different than most people's. Funny, how we are all so so similar but so different.
Nope Christina...it's similar to mine and many I know.
So much for a beautiful young lady to deal with. I admire your positive attitude, but I'm so sorry for what you go through.
+SimplySadie Thank you very much!
You are so damn badass.
+Jacob Perez ❤️
Hello, I have EDS too! I really loved this video- it was so open and honest. I'd love it if you did a video explaining your nebulizer and feed-system and picc lines. You talked about doing a video about your braces and splints an that would be really good to see too. Thanks for sharing a little bit of your life on TH-cam!
Thanks for watching! Those are all videos I absolutely want to make very soon when my health is a bit more stable.
Yes- definitely get the recovery that you need! I'm cheering for you- internet stranger! We can do this EDS thing!
I appreciate you making videos keep it up👍🏾🙂
really enjoyed this! great video showing the reality
Thank you very much Dawn! :)
Christina your such a beautiful and amazing person always so positive and greatfull I'll never be as pure at heart as you are even though we suffer from a lot of the same illnesses you always make positivity of it. I guess I just need to learn to be greatfull for the things I can do and the health I do have always learn something new from you and the other eds warriors and c.f soldiers .
This was awesome! Great job! Thanks for showing us a glimpse into your life. The fact that you can do all this with a smile is truly amazing! I admire you. So the multiple times you were crushing things up and then dissolving it in liquid and then injecting it into the tube- was that mainly meds or food? Can you eat any solid foods?
Thank you so much! The pills and liquids you saw me crushing/dissolving/pouring were my medications. The pump in the little black backpack and one of bags on the IV pole are my "food." I am currently unable to have real food unfortunately.
Stooop it! I’m in love with your Totoro slippers. That was my favorite movie growing up. I made my mom rent it a million times. Idk why we didn’t just buy it lol
My name is Sam I have had eds type 3 since I was 18 months old. I am now thirteen and am struggling to live my every day life. Because of people like you who share my pain I get up in the morning thank you.
Another subscriber, thanks for giving me inspiration and making me bothered to do every day tasks, also making me appreciate life more, I have good days and bad days but when watching what you have to go through every day it makes my life seem easy, so thanks you again, the least I could do is sub, I may not know much about EDS but if you ever want to talk you know where you can find me!
Thank you so much for watching my videos, I'm so very glad you liked them. Im glad I could educate you a bit about EDS and that you felt inspired. It helps me too sometimes to remember that everybody in life is going through something, we all have our own everyday worries. :)
thank you so much for a relatable video - i have type 3 hypermobility and i know the feeling of putting on the braces in the morning! :( x
You are beautiful and strong! a really great person. Keep fighting! a big hug from Italy!
+Flavia De Cilla Awww thank you! Hug back from the US! ❤️
Great vid, thanks for sharing
i have to say...i LOVE your totoro slippers!! too cute
Physical therapy and pharmacy for prescriptions sounds like a typical EDS day. What hand splints are you wearing?
The ones I am wearing in this video are "metagrip" CMC braces in size small
For Real Lol!😅...
@@christinadoherty3212 , Thank you so much for sharing and educating those to familiar with the struggles and issues that come from EDS.
May I ask what type you have? I am type 3 hypermobility, with POTs, endo, POC, and other issues.
You are so brave Zebra ❤ beautiful inside and out
+Ashley Patterson Thank you, thats very sweet of you to say!
thanks for sharing ❤️
Great job!
Thank you very much Daniel!
I have type 3 EDS. I'm just about to start PT and only really have severe pain and dislocations. I've started using an elevator at school and ur videos have really pushed me to keep going.
you're so pretty! definitely enjoyed the video. thanks for sharing :)
+Loren Elizabeth Thank you :)
You did such a great job love this video, you should definitely make more! I'm so proud of how far you've come and how honest you where in the video because I know that can be hard. I'm filming my video today 😁 I was just wondering where did you get the background music from? Hugs! 💕
I can't wait to see yours! I linked your channel in my description :). TH-cam has its own royalty free music library. I think I just googled "TH-cam audio library
Awe thank you so much! I'll link your channel too once I upload my video tomorrow :) Thank you for telling me about that it's definitely helped me edit today!
Thank you for this video
+Milena Kerst 💜
very interesting! thanks for sharing!
+momowowo16 ❤
Please make more videos
I plan to
I just discovered your channel, I really enjoy watching your videos, and subscribed of course ! :) Little question: is it your choice to take your medicin trough your feeding tube, instead of pills?
+Lynn Ngn I am unable to swallow anything more that some water. Part of my esophagus is paralyzed. So pills would just sit in my throat if I tried to swallow them
You look like a Disney princess. So beautiful!
+Mariah Fernandes Wow! Now that is the ultimate compliment 😊 Thank you!
YOU'RE SO CUTE I LOVE YOUR CHANNEL :-*
Aww thank you so very much! :3
I am wondering what the name of your background music is called? Love it❤️
I have EDS and go to that same pt place! We might even share the share physical therapist, small world :)
My girlfriend, Stephanie is really moved and inspired by you and now so am I. always remember that god gives his hardest battles to his best warriors
+Sno- bl1nd
Oh my gosh, I just saw your David Bowie t-shirt! I adore him, please tell me that's not only a fashion choice :D. It would be so cool if we both have EDS (and POTS, and Chiari,...) and like David Bowie :D.
Hah I swear I am literally wearing it right this second! And im uploading a video right now with me wearing it lol. Definitely not just a fashion choice! I absolutely adore him!
That's soo crazy!! :D He's the best.Why do you have to live in America, I would love to hang out with you, we could watch Labyrinth and listen to his music and have like the greatest time ever :D. If you ever come to Germany, we have to do that! :) (oh by the way I'm 22 and my name is Inga :), I should really put a picture of myself on youtube. :D)
i love ur wrist bands
Thank you!
i also suffer from it myself
if you ever need a friend to talk to let me know . i dont have much that understand
Can you make a video about MCAS please and the sympoms?
I have EDS type 1 (not too serious but still flexible and my body hurts sometimes and a lot of cramps in my legs, feet and arms..)
Think you should do another day in the life video, so we can see the changes =)
may God be with u
+Ibrahim Abdulmalek Thank you very much, you as well ❤️
Hey what's the brand name for your thumb glove/braces? I'm have VEDS with HEDS crossover and use a wheelchair and those look like exactly what I have been looking for
The thumb brace that I am wearing in this video are by the brand "Metagrip." I got them on Amazon as advised by my OT. Unfortunately insurance doesn't cover them. I am wearing a size small if you want a reference point with sizing :)
Christina, You are gorgeous!
+HOT ROD BOMB Thank you!
since you're allergic to adhesives what do you use in place of adhesives when you need an IV? Thank you for the great videos!!
I have had fairly good luck with the brand "IV 3000" dressings. I do still get itching and some hives but I use benadryl cream on it and it usually does the trick. Thats what I use to cover my PICC line :)
Thank you!!! I react within seconds of tegaderm touching my skin and none of the nurses seem to know what to do.
That's a lot to do!
What is the breathing thing and why do you need it?
The final count down is here for me!!! July 15th I get to see my geneticist!!! I was doing quite well pushing extra nutrition in my and slowly trying to gain some strength back in my body. I have had a crash this week. Maybe I have overdone the little things I have done to help me. I'm frightened though. I fall into times that I can't eat. And I have this shaking in my vision along with time loss too. I see my Rheumy this coming Monday. I'm frightened of the medications. I was put on a SNRI to help with pain and I cannot take this because of my heart. Micro vale 4, problems?!? So I stopped taking this and just try my hardest not to eat to much Advil which doesn't cut my pain but helps a smidgeon 👌🏻 may I ask what medicines do you take? I am so frightened of medications....
Wonderful video!!! Thank you BTW💓
So glad your appointment is coming up! I know what you mean about the crashes. Its always such a fine line between pushing yourself so you can get stronger and overdoing it. I actually don't take any pain medications since my body can't tolerate them and as for other medicines, I take quite a few and don't quite feel comfortable posting them so publicly. Feel free to message me about it though! Are you currently being followed by a neurologist? It sounds like you should be seeing one due to your neurological symptoms. If you don't already have one maybe wait and see if your geneticist can recommend a good one who works with EDS patients.
+Christina Doherty (Watercolormeimpressed) oh I can understand that, sure thing, I will message you when I get to my computer. Thank you for your time darlin. Yes I want to wait to see the geneticist and take on a dr. from their recommendations. The Dr.s I'm currently with... Hmmm not personal or caring at all. It was a blessing I was accepted for the geneticist where I live. The only one in the tri state area. If I didn't go to their walk in clinic 2 years ago. They couldn't accept me. BCBS is no longer accepted unless you wiggle in from the clinic... Thank god for the cold and cough I had, or I would t have been accepted. 🤔 again thank you for your time and your consideration too. 🙏🏻✨😉
I have been thinking about you, I hope your appointment went well!
Hello my dear, aw thank you so kindly!!! It went very well. Yes on hyper mobility, with sub classical; I have some classical but not all, and 95% on vascular. I was so exhausted after that day. I have lots of appointment to make.
I took a week off from everything even chores to get my strength and whit’s about me, then woke up with a stiff neck that left and came back and has stayed with me till yesterday. My headaches with that have been horrible! I have to be checked for the Chiari malformation, I can't wait to start physical therapy... Oh I need it so badly. I don’t have anyone to help drive me unless my husband takes off of work. Thank goodness my neck is back in okay shape, I can drive now! Yippy!!!! I get to make my appointments!!!!
I wish so badly my mom was still alive... I sure would love to hear her words of encouragement, at this time. But then again, I am of her and can just imagine what she would say to me, "One foot in front of the other." “Rome wasn’t built in a day nor was it destroyed in a day either…”
I am so elated to have a name. I am so grateful that everything I shared and explained didn’t sound like I was an enigma… I know that vascular can be horrible in the long run, but I am the, glass is half full type. Life is what it is and I will make the best the life I have. All in all, I worry about my son, he is going in for heart test’s as I am too. Both of us have POTS symptoms… I always thought that was kinda normal because I have always had those weird fuzzy hazy feeling when standing to fast… Guess not, huh…
All in all I am so happy to have Dr.’s that are telling me to make sure my doctors listen and if they don’t I need to find another doctor. I believe I am going to call my case worker and ask her for a reference, because I have 2 doctors I want to fire. ASAP… The day I went was so busy an I was so tired I forgot to ask. Hahahaha The things I miss the most are…. Drum Roll…… The things I forget… hahahahaha badom ching… hahahaha…
Thank you for your message… Warms my heart you remembered me.
stay positive u pretty girl
+Marinela 5.anovic Thank you, I plan on it! 😘
I hope you don't mind that's I ask about the thumb brace-looking apparatuses? I have a lot o hand, wrist and thumb trouble so naturally it was the first thing I noticed an have never seen before. Thanks :)
+Julie Rae The thumb braces in this video are from the brand "Metagrip." You can get them off of Amazon. They stabilize the CMC joint (the big joint at the base of your thumb/hand). I highly recommend them for that joint. Then for the other thumb joints I wear silver ring splints. You may have seen them in some of my other videos. I do have a "Braces and Splints" video as well that gets more in depth about it
Christina Doherty thanks :)
For the giveaway: This is the first video of yours that I ever watched!
im in high school and I want to go to college to be a physical therapist. I've had so many knee problems growing up and surgery and spent up to a year in physical therapy (not what you go through though)
Where do you go for PT? I just moved to providence RI (i think thats where you mentioned yours was) and I have EDS type 3 and I have been looking for a good physical therapist in the area
I will send you a private message :) You happen to live in the perfect area
What do you use the iv and the feeding tube for and what kind of doctor did you go to to receive this type of treatment? Thanks!
The feeding tube is because I am unable to swallow as well as having such severe food sensitivities that any food will make me react. Even the smell. So I have to use a special hypoallergenic formula. The IV is so that I can give myself IV saline infusions 3 days a week to try to control my blood pressure and heart rate. I am maxed out on all of my BP and heart medications and was still fainting 5-6 times a day somedays, so the IV saline just helps to keep up my blood volume. The feeding tube was placed after one of my spinal surgeries ,out of state, after going to the ER because I couldn't even swallow medications or get any nutrition. It is now followed by a GI, nutritionist and a feeding clinic back at home. The IV saline is prescribed by my cardiologist and a visiting nurse changes my PICC line dressing once a week. Hope that is helpful!
Thanks for your reply!
Where did you get that mask? I use the 3M charcoal one, though it has a lot of shortcomings, not the least of which is it’s uncomfortable and you gotta replace the whole thing often enough. Not great but better than nothing. Another brand (I forget the name of) actually stinks of chemical and causes rashes.
What type of mask do you where? I have MCAS as well as hypermobile eds. I need a good mask as my mcas is triggered by fragrances.
Hi, I have severe allergies and a weak immune system and I use Vogmask or a Cambridge Mask! Both are available on Amazon or the retailers sites! Good Luck!!
Where did you get your mask and what is the specific name of it? My wife has been looking for one like that for awhile with no luck.
Thanks!
I ordered mine from a website called Vogmask. The specific item number is "Black N99 C2V." It does not filter out all smells but its the best I have found so far. I recommend getting one with the two valves for comfort and ease of breathing/talking. Unfortunately they are always sold out of the fun colors with two valves in medium (recommended for
I've relayed this to her. Thanks so much for being so helpful!
what kind of pill grinder do you use? i have really weak grip strength, so im looking for something easy to twist.
Here is the amazon link to the ones I use. I think we got ours at CVS. They are definitely the best ones I have tried so far, but I do still have my mom do most of the crushing because of my hands and wrists. www.amazon.com/dp/B009WQSC1M/ref=cm_sw_r_cp_api_XLQAxbEQMZYXM
thanks! :D
does your pt place have an ot? I live really close to providence, RI and have to find one that I don't need to trek into boston to see. If you're comfortable sharing where you go feel free to message me!
Unfortunately I don't think they have an OT in their practice. they do a lot of manual therapy, but not really the practical everyday stuff that an OT does.
Christina Doherty that's alright! Thanks for letting me know!