Vlogging with EDS: Tough Week and My Sister's Neurosurgeon | Week 9
ฝัง
- เผยแพร่เมื่อ 13 ต.ค. 2024
- This week my sister got some really amazing news about her health. We are all very excited and relieved for her. Turns out we are nothing alike (but we could have told you that a long time ago). I unfortunately had a bit of a hard week so the vlog is a bit lackluster, but hey, thats life!
Where to find me:
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
My Etsy Shop: www.etsy.com/s...
My Redbubble: www.redbubble.c...
My Medical Facebook: www.facebook.c...
My Personal Facebook: / christina.doherty.315
My Email: Watercolormeimpressed@gmail.com
You are never boring dear Christina. I love love all your videos I feel like you are
my friend even if I don't know you. You company me in my illness. Thank you.
Well I think of you guys all as my friend too :) I look forward to getting to know you more
Amen
I hope you are feeling better this week, Christina! I just want you to know how much you have comforted me since I stumbled upon you after my diagnosis of POTS/EDS-HYPERMOBILITY 2 weeks ago. Being tested for Mast Cell Activation starting tomorrow. You have been a calm in my storm. Thank you for being you!
+Amanda Barrie Welcome to the zebra herd, im sorry you are dealing with all this, but im glad you have answers. I know how long of a journey that can be. You will be in my thoughts and prayers tomorrow as your journey for answers continues.
Thanks, Christina! Holy Cannoli - I also had a Tilt Table Test today - that sure brought some fresh h*ll. :) I'm still smiling, though! And everyone doted on my service dog who was with me the whole day in the hospital. Not too sure why I was put through this when it was already determined that I have POTS and Orthostatic Hypotension...guess my doctor wanted to make it official and give me a story to tell. I just know I couldn't wait to write you back after seeing your sweet welcome message to me. I hope your Tuesday was heavenly! Hope you had a great physical therapy session!
I've watched almost all your vlogs. YT recommended you to me. I had never heard of EDS. I'm amazed by your positive attitude. ❤
+miracle84 Aww well thanks! It always makes me smile to hear non EDS patients watch my videos 💜
Oh and nice to see your sister *waves* would be fun with a sister QA :) how did EDS affect you when you were growing up? did you have early growth pains in your legs? my kids started having growth pains at 3 and 4 and I had them really early too. I often stumbled and fell on my own feet. I had problems with my stomach really young too. Sometimes.it is nice to hear I'm not alone even though I don't wish this on anyone else.
You don't need to apologize on how your video look or don't look. I love your videos. Being honest is the only way to be. I pray for you and your sister after every video.
+Christopher Youse Thank you so much! Your prayer means a lot
I'd love to see a video with you and Lauren! I didn't realize she has eds as well but I'm glad she is doing alright! My heart goes out to you and never apologize for feeling ill! You can't help it and you need to take care of your heath first and your account second xxx
Im sure Lauren will make an appearance in another video soon. She and I have very different presentations of the condition. We hope to make a Q&A about growing up with this
Can't wait to see it. Hope you are feeling better x
Christina, could you do a video on the topic of physiotherapy? Talking about your routine, thoughts and experiences and maybe showing some of the exercises you do? You have been mentioning physiothrapy now and then and showed one of your trips to an appointment. Hearing more about the topic would be super interesting! I know you have a lot of requests coming in for all kinds of different videos and doing them is hard work, so don't feel pressured about it. Your videos are nice in any case.
+sointu100 This is definitely on my short list! Im hoping that maybe my PT will let me interview her a bit or do a Q/A type thing. She can explain it all so much better than I can :)
You're never boring! Xxx Real life... Ebbs and flows
Please don't apologize for having a normal life. Your life is still a lot more eventful than mine. Much love ❤
Thank you so much
prayers to you n your family
I am so sad you are having such problems. My health has decreased and pain has increased a lot the last few months. I can not imagine how difficult your videos are to make, but they are helping so many chronically ill people all over the world.
+bill hundt Im sorry you are feeling poorly too. It isn't always easy to film, but I do really enjoy it
Healthy happy thoughts to you and your sister
Also mom and dad.
Heck happy thoughts to all the sick and their care givers
Sorry to hear you've been having a bad week. Hope you start feeling better soon!
+Chronically Hopeful Thank you so very much. Im already feeling a bit better
I love your sister. I hope that she's in more of your videos. The two of you together are so cute.
+Becca Charpentier Lol im sure she will be very glad to hear that 😊
Becca Charpentier ❤❤❤❤
Hey Christina! Since you talked about reintroducing food, I thought I would share what my neurosurgeon said about swallowing problems. Of course this might not apply to you at all! I did a test where I swallowed a liquid contrast and then they x-rayed my swallowing process. The neurosurgeon said it was a liquid because most people with swallowing issues have a much bigger problem with liquids than with a porridge-like consistency, I know it sounds weird since I have trouble swallowing solid food
I had a few of those tests! lol Aren't those super weird? hahaha. on my most recent scan it was clear that I certainly couldn't handle solids/pudding and I wasn't as bad with liquids. They found a specific thickness that worked best (slightly thicker than water). But then I ended up reacting to the thickener. Im hoping if we can get my allergic reactions under control I will have a better chance. Im craving carrot juice! lol
Oh yeah, I bet it makes you crave even the weirdest things! I hope you'll be able to reintroduce food soon!! You probably already tried mast cell stabilizers right? I cannot tolerate histamine but we don't know if it's mast cell related, I'm thinking it would be, but my doctors don't know much about it at all :D. It's weird and terrible when so many things give you a reaction. Those swallowing tests are super weird!! They even put a camera through my nose to see everything while I swallowed! I'm really glad your sister doesn't have a chiari or anything like that! I just found out I have one, even though it's mild luckily, and I have adhesions on my spinal cord, they look like little cysts. I'm just amazed at the plethora of medical things one can have that I never knew existed :D.
Your sister is funny. Seems like she really loves being on camera and seeing herself on the screen. Lol!
Have you tried an ionizing fan? it doesn't help everywhere but it makes a fairly safe space to breath in your room if you put it near the highest point of airflow into the room. :) it can also cut down the particles in the air fractionally over all. I find that it's especially useful to throw on high while you are vacuuming or cleaning the area where you sleep. Most of the dusts and getting pulled out of the air before it has a chance to settle in fabrics and textiles where it can be sent airborne again or collect in a high contact area where you may come into contact with and react to those particles. :)
No idea if you have tried this already but it really does seem to help.
+Zamp Magic I actually do have one! Thank goodness for it. I swear we have one of every air filter one the market all over my room and in the kitchen and halls lol. It looks insane but it helps
Christina Doherty So glad you have that going for you. I hate the thought of you going without. I love your mask for on the go btw. mine is only fabric for large particals. does that company have anything in purple?
I'm so sorry you had a rough week! I've been having a rough time with my health lately too. You're certainly not alone!
+Maddy Grace Thanks girl! So sorry you are feeling poorly as well
I hope you're feeling better!!!!
+Dana Max Thank you! I am feeling a bit better
It was cool to get to know your sister more. lts funny how different you both are. Don't say sorry about your videos. I imagine a lot of the people that watch have EDS or at least know someone who does. We understand a rough week. Yet you still film. that's strength my friend. Keep up the amazing thing you're doing
+Kerry Sheehan
Kerry Sheehan ❤️
I hope you do more videos together soon. I've actually been thinking of starting my own vlogs.
Awww... I'm so sorry you had such a bad week. 🙁 Sounds like having your own part of the house (ie: bathroom, etc.) to keep sterile might help to avoid reactions? Not sure how feasible that is though. Glad the Benadryl worked. I take it to sleep at night.
I'm still coughing, but getting better slowly. If I do too much, I get dizzy and my heart beats too fast. I'm also gaining weight (a side effect of aging). I can't wait to get back to exercising. I'll be praying for you. Will you pray for me too? Much love.... xoxoxo.
P.S. It was nice to cyber-meet your sister. She's so cute. You guys look a little alike but I can see the difference in personality. You're both so cute! Was your Mom hiding from the camera or tired of waiting? 😆
Whit U. Forever ❤️
+Whit U. Forever We are trying to decide if we need to move or renovate the house or what. I ideally want to move out, but realistically I don't think thats feasible. Im glad you are a but better but sorry you are still struggling. I hope you can get moving again soon! My mom was napping lol She was preparing for the 2 hour drive home 😂 She has the gift of sleeping absolutely anywhere
Hey Chistina, hope you are well. Lots of POTSY's I know get dextrose in their fluids. It's known here as D5. It's 5% dextrose in a letre of fluids. Lots of people say the dextrose makes difference in how long the fluids last in the body. ie longer between bags.
Super helpful! Thank you! I will talk to my cardiologist about this when I see her.
I have been having a tough week as well in some ways. For the past or more I have been very tired and been sleeping 12 hours almost every day, no idea why lol. As far as blood sugar is concerned, I have had hypoglycemia symptoms my whole life. I actually think that was the first medical symptom I had. When I was in kindergarten I passed out while sitting down, and the doctors were clueless as usual, but I now believe it was a low blood sugar episode. It's definitely one of the more annoying symptoms as I will be feeling fine and then suddenly my blood sugar will drop within the course of a minute or less. The speed at which it happens is the worst part because when I used to drive that was scary for me. I also get really grumpy and angry once it drops, so it sucks for people around me then too.
+Josh Hittie Im sorry to hear that you are struggling. Hopefully your body is using this sleep to rest and recover.
Thank you for sharing
💖
I think I've seen you drink coconut water before, if so chocolate coconut water has 10g of sugar in it. Thats what I use and if your not allergic then you could probably put it into your feeding bag and see how you feel. hope u feel better! :)Also if your going to try food in the future I would try a nutrabullet and getting it to the same consistency as your formula and see how your body reacts.
+Noel Bivens Unfortunately the coconut water phase did not last long before my body started reacting to it. Im not sure why that always happens. Its like it builds up or something and I can no longer tolerate it. But thanks for the advice! Maybe some other zebras here will find it helpful. I had no idea there even was a chocolate version !
Hoped Xolair will help enough that even if you can't eat, you can at least find supplements you don't react to. Do you react to plain Pedialyte? I receive dextrose in my IV fluids which has been a massive help.
I have hypoglycemia a lot and that's exactly how I feel when I get low blood sugar!
I have the same problem with my sugar. I get glucose powder through my feeding tube. Same as the tablets that they sell, but in powder form. In the Netherlands you can buy a glucose meter for home just for 10 dollar. I can test myself, that is better Than the ER. I hate the ER.
hope you find some answere's soon. All the best xxx
+Debbie Hellenbrand-Klooster Super good to know! My Doctor is sending an order for the monitor for the insurance, hopefully I will get that soon. The monitor itself I could go buy, but the test trips and supplies would get so costly if I don't go through insurance
Christina Doherty over here I payed for strips and monitor around 20 dollar. And I know a friend has it from Aliexpress and it works perfect
Christina Doherty over here I payed for strips and monitor around 20 dollar. And I know a friend has it from Aliexpress and it works perfect
+Debbie Hellenbrand-Klooster Wow, thats pretty cheap. When I saw them at the pharmacy the monitor was like $40 and the strips were like $20. And idk about the pokey thingies lol. Hopefully I can pick up the one my PCP ordered tomorrow or the next day though. If not I will look into aliexpress (although I know they take forever to ship)
"I feel like my body isn't part of me" - you should look up depersonalization, it's a really common mental phenomenon that fits that sensation to a T.
Interesting, yeah I can relate to some of the things I have read. I recognize that it is a coping mechanism and Its something I am working on. I think that making these videos has helped me a lot. Thank you
Christina Doherty no problem! I experience depersonalization sometimes so when you described those symptoms I was like "THAT SOUNDS FAMILIAR" XD
Christina Doherty It can also be a migraine or seizure aura too.
I'm sorry you're having so much trouble with vitamin deficiencies. My wife also struggles with this, not because of EDS, but because of malabsorption related to her cystic fibrosis. Liquid chlorophyll helps with her iron levels and has proven to be the only thing that works and doesn't give her negative side effects. Is that an option for you? Perhaps a tablespoon twice a day through your G-tube?
+John Loughlin Thats a fantastic tip! Thank you! I will look into it 😊 All the best to you and your wife 💜
I have cervical instability and its horrible. Did the tightness in your neck and shoulders go away after the c1c2 fusion? Did your head feel heavy?
+Dayna Vigil-Griego The tightness really didn't improve much right away. I think you kinda trade in the instability spasms for the surgical spasms. But it has been getting slowly better since I have started to strengthen my neck muscles. Recovery is quite a process. I remember my head felt pretty heavy at first as well because I had been in the brace so long and the muscles were weak from surgery. But that has also been improving.
Christina Doherty what types of exercise do you do to strengthen your muscles? Did your head feel heavy prior to the surgery?
Would you do a video on your mast cell disease ever? I'd be really interested to hear about that x
+Maddy H Yes I certainly will! Its one of those topics that is very confusing so I am learning as much as I can on it so I don't want to get anything wrong 💜
What dr do you see in md?
+Katie Dersch I see a few different doctors in Maryland including a neurosurgeon and a hematologist. If you are looking for more specific information I would prefer you private message me either here or on one of my other social medias, its just easier to chat that way 😊
Hypochondriac 😀