Vlogging with EDS: I Pulled Out My Own Feeding Tube! | Week 85
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- Опубліковано 4 жов 2024
- Some of Dr. Pradeep Chropra’s Past Lectures:
Managing Complex Pain in EDS: • Dr. Pradeep Chopra pre...
Diagnosis and management of CRPS/ RSD: • Diagnosis & Management...
Trish Meegan’s Past Lecture: • Trish Meegan, DPT pres...
Dr. Anne Maitland’s Past Lectures:
• Dr Anne Maitland Prese...
• Dr. Anne Maitland pres...
My Memory Loss Experience: • I Lost 3 Months of Mem...
Ehlers Danlos Society:www.ehlers-dan...
The Chiari and Syringomyelia Foundation-CSF: csfinfo.org/
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No one should have to deal with all the issues you do, especially at such a young age. Gentle hugs & prayers! God bless you lovely lady!
I love that you have a Frey life water bottle I love them! And you. Two great channels lol
Jessica Kellgren-Fozard has a great video about memory loss and how to cope with it, its called "i can't remember yesterday" I think.
At first i cringed while reading the title & then i was like "oh she probably means that she changed it herself" 😂
Megan Smithers same haha
I heard Dr. Healy speak at the Marfan Conference last summer, and you are very lucky to have Trish! They know what they're doing.
I've got a few ideas for you! When need to do a sterile procedure like accessing your port or changing the dressing by yourself, the last thing you want is to look straight down and breathe on it. Set the video up on your camera, tablet, or phone up in front of you on so you can see your port without looking down on it. This will allow you to access your port or change your feeding tube. If you can change your gtube(great job btw!), you can access your port. Tell your nurse you want to work on it. It is so much easier to do yourself and once you learn you won't want anybody else doing it. Because it's in you, you know right where it is and how much pressure to exert. Your dad is wonderful! If something breaks on your oxygen, iv or feeding pump, you can call your homehealth company anytime 24/7 and somebody will come fix it. Have a great week!
I had a feeding tube in my nose for about six weeks. Had a total laryngectomy. Thanks for the video.
Thank God for Trish!
That conference sounded fascinating. So glad you were able to make it. I love that advances made in human medicine can benefit animals and vice versa. PS-I know she probably hears it a lot, but your mom is amazing! How is she so strong with so much stamina? Shout out to your dad, too!
Those gripping pads are AWESOME! Total lifesaver! Mast cell being an autoimmune component, which causes pain makes so much sense. I remember after my neck surgery in March 2016, and I didn’t know I have mast cell (but I had my suspicions). That being said, once I started the mast cell protocol, my pain and inflammation got so much better.
I'll be at the conference in August! :) I'm crazy excited!!
I will say a prayer that you have a better week!
Oh Christina, I’m so sad to see you going through so much right now. Even through it all your light still shines. You have the most positive attitude and I find it amazing and inspirational. I pray you don’t have to have the shunt but if it helps relieve your symptoms I’m grateful it’s an option. Keeping you always in my heart and prayers. ✨🦓✨💞✨💫
Christina great job on changing your feeding tube on the blog. There was a quick gasp at the moment where you met resistance but basically you made it look so easy. You will be making tutorials on how to change your feeding tube next. Hugs and kisses Jessica.
Glad u got to go the conference. They can be so interesting and informative for patients. Sammy is so cute 😍. Sending love and prayers from Scotland 🏴 xxxxs
I love you Christina & I love your videos & thank you for sharing!!😄😄
You have beautiful skin, I’m really noticing it in this video. I’m really glad you made it to your conference! You’re such a trooper
Your eyeshadow for the meeting looked so good! ❤
That's exactly how I've been feeling ever since i was put on topamax... It's given be acquired dyslexia and memory issues. I've always had a very sharp mind and lately i feel like i don't even make sense to myself. I have to reread everything i type 5 times to make sure that i even finish a logical sentence.
You're so amazing and inspire. I can't thank you enough.
Proud of you! So sorry for your symptoms!!
Praying for You about all You're going through that You get it all taken care of glad you got to go to some of the conference You are amazing still vlogging thank You so much glad your Dad had a nice Father's Day
Praying for a good week for you hugs xxx
Youve had a rough week. I love how you push through. You are in my prayers always. For the headaches try icy hot on the back of your neck and the front of your head. Then ice your neck.
Ok first off yay doing your feeding tube yourself! Secondly that lecture looked so interesting it’s great they are starting to work things out! Lastly your eye make up when you went to the lecture looked stunning on you xx
Ahhh the Frey life wow UA-cam is small (on the bottle)
“You can just feel the access.” 😂 Seriously though. 😤 I was literally just saying half an hour ago that medical settings are among the worst, ironically. It’s so FRUSTRATING!
That’s so funny about your dog having dislocation issues too.
Feeling like you’re losing your marbles and losing time is scary. I feel you. 💜
Great job with the feeding tube, Christina! You look more like you this week xxxxx
Enjoyed the vlog as always but sorry you had a rough week. Fingers crossed some answers are coming your way 🤞🏻🤞🏻
I can really relate to how you feel about losing time and forgotten memories. It can be really scary when you are lying there and suddenly you realise you can’t account for the last 2 hours, and it’s so hard to explain to anyone else. Often the response is you must remember something or feel something. Or another is are you sure you didn’t just fall asleep. I get these quite often. Don’t know if they are due to my low blood pressure or low oxygen levels. Or whether they’re more to do with fatigue or stress. Either way I wish they didn’t happen as much. I’m kind of glad that I get to speak to someone else that knows how this feels. Looking forward to your next video Hugs and kisses Jessica.
I understand how you feel about losing your brain/ability to think/comprehend/remember/etc. It is a fear I have also. My mobility is limited, I live in constant pain and, like you, it feels like my intelligence/memory/brain/etc are all I have left and the idea of losing that just terrifies me! I will pray that it does not happen to you or anyone else.
(edited because I paused to type the first part of the comment, so here's more) The symposium sounds so interesting! I love medical stuff and learning medical things and I think it's great that they are recognizing similar conditions in animals as that helps to prove that these conditions are definitely not "made up" or "faked" (though I do wish the animals didn't have these conditions same as I wish people didn't have them). The lack of the ramp for the elevator is crazy! Maybe you should send a letter (or an email with pictures/video attached?) to the medical facility that owns/manages that building and let them know that the elevator in the garage needs a ramp so handicapped people can access it. I'm glad you had a good time at the symposium. I will follow the links to the speeches as I am very interested in hearing them.
Ohhhh what a wonderful Father's Day celebration! Your family is just wonderful and so obviously a very loving and supportive one. It is beautiful to see :)
My Pomeranian has the same thing with her back legs/hip. It goes right back and she has never acted like it causes her pain. I have always had migraines just didn’t have the right name for them until I was 20. Since my spinal/brain surgeries I have gotten migraines more often. The first year was not as bad and I got them if I turned my head to much or stayed in one position or angle to long. The surgeries in 2011 followed by the cancer surgery and radiation treatments really did a number on me. Being stuck in a very uncomfortable position for the treatments put pressure on my neck, head, arm and because I was actually positioned incorrectly with my arm it aggravated the nerves in my shoulder, neck and head. Plus the abscess that was forming and the infection with it caused a buildup of excess spinal fluid and any pressure on the back of my head and neck caused my nervous system to go crazy and I had many of the same symptoms you have mentioned. I get vertigo anytime I lay down turn on my side and heaven help me if I stand up to quickly. The weather has been causing lots of pain and pressure. My sinuses are malformed and any time I get fluid trapped it can really hurt. My medication doesn’t help much and if I can’t handle it I will have to lie down in a dark cool room.
I live in Maine. Hope your dad had fun!
Wait what?! You were chugging water?! Your able to do that now - for some odd reason I thought you were not able to do that or at least not yet... Awesome - Good for you in changing your own tube! Lol "In my eye sockets". Im so sorry with the memory loss... I have roughly 9 to 12 months of memory loss for myself... Totally get the headaches and the posability of csf leaks and or high pressure... There is a pretty awesome Dr over in PA by the name of Dr Liu that I have heard wonderful things about and I am checking into him as well. A shunt is an option but you may just need a stent, that may be another option that is less invasive! From what I hear and know Dr. Liu even specializes in us EDS folks! Eeeek ya mall life is not fun - talk about sensory overload! (White balance is picking up your little curtain thing that's why is being a little odd). Awe if I had an extra spoon I would give you one! As always I really appreciate your videos every week! gentle hugs my sweet friend!
I think it’s high CSF pressure that sends my lower back into absolute fits . How is your sister feeling ? My small Cavapoo dislocates her knee all the time , the vet said it was ok . I’ll be praying for you and your family 💕 !
Born Again Farm Girl
Born Again Farm Girl
You have so beautiful hair ! I had to cut mine because I don't have the strength to wash them
Wow you like The Frey Life too. That’s awesome. ^_^
I work for the arc of baltimore at a group home for men with intellectual disabilities. One of my guys has a shunt, he is mostly blind (legally) and suffers from severe migraines that are debilitating about once a month. Anyways, you can only actually see the shunt under the skin on his head when he gets a short haircut. Me and him and really close, and he told me that the shunt really improved his quality of life. It seems like a grueling operation, but it doesn't seem to affect his day to day life at all really. You can't see it(with hair) and I don't think he can feel it. I also don't think it causes him to pee more than normal or anything either. I wouldn't want it if I didn't need it, but I don't think it's that bad in the long run. Especially if it will take away your headaches. Just thought I'd tell you something positive about it.
Good luck to you....I think you should get to the neurologist as soon as you can get there!🙏🙏
Headaches that get worse when you lie down tend to be due to high CSF pressure. Source: I have them!
Oops, you said that! That's what I get for commenting during the video!
I have issues with memory...I lose words, forget what I'm saying, where I'm going, what I'm doing... I've lost time. Thanks to my neck and brain (Chiari), if I have my head a certain way too long at night (cause I can't bring myself to sleep in my brace), say like watching vids, I pass out and don't remember ANY of the video. Now, thanks to my crappy, EDS illiterate GI, my whole stomach is full of gas from my endoscopy Friday, which he was suppose to dilate my esophagus and didn't. He did however biopsy my esophagus, causing more issues with dysphasia. But all this gas! It's just rolling around, not moving down, or up.. JUST making noise and taking up room. BTW, you look fantastical 💜
Have you tried the Pillboxie medication app? I’d be completely discombobulated without it! xxxxx
I remember you talked about that ankle brace but where can I find it? Can't seem to find the vlog and my mum kinda needs one and that one looked perfect!
+Reny Putman Its a DonJoy POD ankle brace. I got mine off of Amazon. www.amazon.com/dp/B01GD6NQOG/ref=cm_sw_r_cp_api_y6xlBbCWWAD64
Christina Doherty Thank you so much!
I’ve been praying for you since the last two weeks have sounded like CSF problems. Just wondering if you know where that summer conference for patients will be held? Is there a website link? Thanks and blessings, sweetie!💜💕💜
Ehlers Danlos Society 2018 Learning Conference is in Baltimore (Aug 2-4). www.ehlers-danlos.com
Get yourself lots of rest hun xo our bodies tell us what it needs as you know..so you must just need it as our bodies knows best.xo
why on earth would 5 ppl dislike this?
My emotions are the biggest triggers for my mast cell! Sometimes I feel like I can't be a normal human being with normal emotions. Everytime I get worked up or too happy or even sad I break out in hives! Kind of ridiculous sometimes XD
As a former nurse I feel like some of your memory problems are medication related & not any neurological problem. I sure hope this hunch is correct.
How have I been watching your videos for so long....and had no idea you were able to drink water?? The SLP in me is curious! Lol
What area of Pennsylvania do you come to? I am minutes from Hershey.
Congratulation on changing it own feeding tub chick. But wow yrs is up really high.
How come yr feeding tub is up so high. Xxx
"i used my last...spoon." aww something i never want to hear spoonies saying :( rest up, christina!!
It's uncanny how often you hear of zebra types marrying other Zebra types and of course having Zebra children before they were diagnosed. As well as having Zebra like pets. There's another EDS YTer that has a service that I swear is EDSish too. I am also sure that we have had 2 EDS dogs too, both Lab
mixes, both rescues, that we had in different parts of the country at different times. The animals do get allot of things before they use them on us. I sure wish I could have some of the what our dog has for his Arthritis. He has it every 3 months and he is a different dog after it. Very interesting
re the theory the immune system could be breaking down the connective tissue. I know when my inflammatory markers are high, everything seems to get worse for me all at once. Exciting times for us all.
Out of curiosity when you saying "chugging" water do you drink it? I know you have issues swallowing so I was interested. Sending love xx
she can drink water by mouth - and she does, LOTS
how can mast cells be brought on by emotions?
I love yr finger supports. I need the. So so bad. Did u buy yr own or was they supplied to you?Xx hard in the UK.to get what u need xxx
You have to get them through an occupational therapist or a physical therapist and they are maide and designed by the company called the Sliver Ring Splint Company. www.silverringsplint.com/consumers/how-to-obtain-splints/
Nettie Clouse thank you so much hun for replying. I don't know if it will be the same company in the UK.. thank you for yr reply 💚💙
Is that a ficcare in your hair?
When you say chugging a bunch of water, did you mean by mouth or via the tube?
+nolabeats2015 I drink water by mouth 😊 i am cleared to do it as long as Its filtered water as that doesn’t pose as mugh of a risk if aspirated. It doesn’t go down immediately (usually its down all the way within 15 mins). Some days It doesn’t really go down and then I do it through the tube.
by mouth
I'm confused, does your sister have eds too?
Unfortunately, yes
Elke Doherty Give Lauren a hug for me? I know it's hard. My youngest son has watched me go through so much, and he's slowly getting worse himself. He has POTS and Dysautonomia, and if he were to get a decent job🤔 he could get tested for EDS.
Do you have a g tube or a J tube?
+Nichole Bird G tube
G-tube
What's wrong with your sister? Xxx
Rebecca Fletcher She's got EDS too
Ehlers dog lose!!!!! poor Sammy:(
Lol crickets
Yes Christina, you ARE that white. ;)
Christina
Miss you miss volg. New
I know about a 1000 people that would rent your Dad. So if he needs a job let me know 😝
Hey beautiful. Mr. Clean in the big jugs gets out blood stains when poured directly on the stain I wonder if it would get betadine out if you soaked it and left it for awhile then washed in cold water. Worth a shot. Love you so ooodles and ooodles. ❤