Bonnie is so cute! I agree. She should start an Etsy store. Her patches are beautiful. Thanks for sharing your week. I can’t believe that you are having surgery again already. I hope that it goes well and that it is successful in solving your knee and leg issues.
Watching you learn how to make sure everything was still sterile and putting on sterile gloves made me remember my health professions class I took in high school.
Prayers for your surgery 🙏🏻💘🙏🏻. I wish I could come over and help you organize. A clean room makes such a difference. My daughter loves her weighted blanket.
The part where your nurse is showing you what to do was soooo interesting. I've always been medically curious so I love when you include clips like that 😊
Hi Christina. Thanks so much for your reflections on chronic and mental illness. As someone who's dealing with several mental conditions, I can relate in many ways to your own strughles. I, too, try to keep a good perspective on things - I've got access to great medical care, and I've undergone very helpful in-patient programs. I am also sightless. I do try for mental illness and/or blndness not to define me. I know I am so much more than that - a vocalist / guitarist, a linguist, a pedagog, a sister, a daughter, an auntie to an adorable little girl, and a friend. (I hope a good one at that.). I thank you so mucb for reminding us to choose joy and to share your hope, vulnerability and essentially your whole being with us. I wish you all the best in your journey. Your videos have helped and moved me, and I'm sure you're making a difference in so so many people's lives.
Another hEDS person here, I had a surgery on my knee and had to keep my leg straight for about 8 weeks, with no weight bearing. For bathroom help, I used a toilet riser, it had handrails, and by raising the seat, I didn't have to lower myself down so far, which meant less effort to get vertical again. We rented ours from a medical supply place. It was easily moved aside for non-disabled people to use the toilet in the usual way. Great video, good luck for your surgery and recovery!
Thank you so much for mentioning mental health as much his physical health. I suffer with both. Pretty sure my mental health got so bad because my hyper pots was misdiagnosed for over 10 years as well as my EDS. They kept telling me I was just overweight or I was just having panic attacks. So I assumed my heart rate was high all the time because of panic and I was tired all the time because of anxiety. You are so adorable and amazing. Thank you for sharing these slices of life with us. I’m trying today the same but I find it very hard. I think maybe my first or second vlog had tons of hate telling me I made up illnesses. I’m going to try again. You definitely inspire me. Hugs and best wishes on your upcoming surgery. 🙏🏻❤️
I was finally diagnosed with fibromyalgia this past week. I was able to order their relieve topical cream for a doable price thanks to you!! I did put your name as my referral!!! Thank you for being such an inspiration to have my own voice in my medical treatments and in my life. Keep up your amazing attitude!!
I know it is probably TMI, but your bathroom tutorial was incredibly helpful! I have been struggling with that due to surgery and loss of muscle and the way you explained it gave me a lot of good ideas to try! Sending you love and well wishes!
Fruitbat I totally agree. The info you gave us about getting up off the bathroom was a very helpful demonstration but due to having both knee problems I can't get my leg behind the I think it's the 90 degree bend but it really helped me to learn a better way so thank you very much for sharing this very useful and important tip. I hope this will help me to have less falls. I also love your little hedgehog it's so cute. I will be praying for you that everything goes well with your knee surgery I will be keeping you in my thoughts and prayers! I love your video's and family. Keeping you and your family in my prayers. Take care and God bless you all lot's of love from me kelli xxxxxx
im super sore and tired today but really busy so im watching this laying face down in the shower letting your calming voice remind me that im not alone 💖
Yessssssss I so agree we are more than our illnesses and it’s easy to get lost in them but our mental health needs us to do more than just be our illnesses. I think that is why I share more than just videos about my health because I want to teach people that we are cool people with hobbies too you know? That’s why I love your videos I’m dying to learn to crochet and I bought myself a watercolour colouring book for my self care days. Good luck for your surgery sending much love xxx
Miss Adventure Ditto! I figure it's nice to have the time to learn things, even though I really hate how much I feel stuck when I have to rest and I mentally would love to do so many things... But, even when I'm stuck having to rest in bed, and am not even able to sleep from pain or feeling too dizzy, etc, but we live in a time where we can watch UA-cam and I used to read stuff online (I often have too many neurological issues to read) but there's so much to learn online with documentaries and everything... I've been able to learn so many skills, I've learned about how to use a sewing machine, my bff is AMAZING and got me a machine for an early birthday present, and the interwebs gave me the info to learn how to do much with it... I wish I could do it without having to be upright, haha, but there's so many different things we can learn, so thank you both for reminding me of how we have the opportunity to learn new things even if we can't do the same things I used to (I was in a cranky mood, thank you both for cheering me up!) :)
likeabunnie you are so welcome! You are incredible never lose that will to learn it will always keep you moving forward and not feeling like you are losing time to illness you know? Xx
HI I'm from the UK - i watch and look forward to your vlogs weekly - every Monday i check for the new one .. You are truly an inspiration and courageous young women . I love your Vlogs and have learnt a lot from you . I hope your recent knee surgery went ok . Gob bless . Claire (Dudley - UK)
Congrats on finishing your morphine taper! Just keep being kind to yourself as your mind and body adjust. You may continue to have some sporadic episodes of withdrawal for a bit and likely after your surgery, but know they are temporary and will pass. Good luck with your next surgery!
I love how Bonnie has a little bow tie on her cannula. That's so cute. I'm so glad EDS has brought you both together to bring each other strength when needed. Stay awesome!
I say that all the time. I wouldnt take away my lupus if i could, it has made me meet so many wonderful people! has made my life richer i feel! i appreciate everything so much more!
On the loo I have a plastic insert which makes the toilet higher , I find I can get up of it easier with my leg straight xxx ps no comment required hugs
Hi I just found your channel about 2 days ago and wow u are so inspirational and have such a warm heart. With everything u have gone thru and still are u don't let it beat u. Thank you for sharing it with us I am hooked watching ur vids and looking forward to the next one. I hope your knee surgery goes well x sending love and well wishes from Cornwall in the UK xx
I'm so glad you spoke up about mental health I'm manic bipolar and I'm super open about it to people that ask questions but I'm so with you on not wanting to be your illness completely upderstand that. Love your vlogs!
❤.. .u just made me cry as 8 just tralised 3xqctly where my mental health is.. that i notmally split myself *crappy body* and *me me*. Try to force "me me* to keep going whilst my body is falling/ failing me and ive just bren gett8ng angr8er and angrier with all chronic illness has done/ taken from me. My mental dis health has just crept up 9ver the last weeks etc. love you.thanks for caring and being my friend xxxx
I slide down my wedge too. Drives me batty. I like Bonnie’s patches. I struggle with balance on chronic illness body maintenance stuff and all the other stuff. Opiate withdrawal sucks. Hang in there. It does get better.
Katie haha I was thinking that! It's definately interesting... LOL, "vile and awesome" is a perfect description :-D Bummer it was hard to clean out... I can't say that I would enjoy that in my bath, but it would be fun for my little niece ;)
+likeabunnie Its out now, so its not permanent lol. I think it was just a thick oil. Its so nice on the skin, but it took a little scrubbing. There are some other colors though which may be a bit more forgiving 😊
Might think about adding a arm rail or handle in front of the toilet the bathroom. This way, you have something to grab hold of in front of you, as well as on both sides of the toilet.
Loved the toilet instructions - those will definitely be handy tips to know for someone! I just got diagnosed last week, so hello fellow zebra! :) Am loving watching your vids, and hoping to get some silver ring splints soon - they look gorgeous on you :)
After my knee surgery they gave me one of those potty chairs with arm rests. It worked out great because it raised me higher on the toilet so that took less mussel and energy to get up and down. Mine came with a bucket and a bottomless sleeve (the sleeve acts as a barrier from the toilet to the potty seat) it's like a bottomless bucket that sits under the potty seat and slides partially into the toilet. I never used the bucket because that's used for beside your bed if you can't walk to the bathroom. It worked great turning my toilet into a handicap toilet by just placing it onto my existing toilet no tools needed and you just have to lift it off the toilet when it's no longer needed. I felt much safer by having those arm rests to push myself up and my insurance paid for it. It also has adjustable legs on it that are easy to adjust.
Hi Christina, why don't you consider getting a raised toilet seat? I have one and it makes life so much simpler! Or you could try getting a toilet frame, which allows you to use your hands and arms to push yourself up, but that obviously depends on how much strength and stability you have in your hand and arm joints. You can buy either of these on Amazon.
Great video as always! Huge props to your dad - so many times the awesome quite folks behind the scenes don't get an atta boy that they truly deserve! Praying for you next surgery and hoping it is a speedy recovery!
So lovely to see your smiley face... You are doing amazing hun with everything you are facing... I also really appreciated the toilet tips ha ha 😉 Very helpful.... Our EDS bodies & ailments are always changing, so great info to have up my sleeve for the next back/hip/knee issues. Sending love & really hoping the knee surgery goes as well as possible. Big hugs from Nicole xoxo
I love your videos, Christina. You have a very appealing personality. Listening to your thoughts about mental health I was thinking how wise you are for your age and how deeply you think about things, when you suddenly said: “I’ll pretty much buy anything with a tassel on it!” That made me laugh. 😀 I do hope everything goes well in your knee surgery. I’m thinking of you.
You are amazing young lady! Keep up the good fight and positive attitude. Love ya bunches. Hope You received and enjoyed the little care package I sent you. I love that you try so hard to help out everyone with the little tricks and tips you've learned. I bought bath tub gripstrips to put on my slippery floor in my bathroom. Sending positive thoughts and love foryouto feel better quickly from the morphine withdrawal, and from your up coming knee surgery. Your fellow "zebra with the grey stripes"
+Teresa Elza- Fry Yes! I did get it! I even filmed it. The file corrupted and Im trying to fix it and include it in a haul video. But If I can’t get it back please know how thankful I am!!!! Every item was so perfect and unbelievably thoughtful. Its amazing how much you guys have gotten to know me 😊❤️😘💗
Have you considered a commode? It's higher than a toilet and has arms. Instead of using the bucket, place the commode over the toilet and use it that way. You can use the arms to push yourself up. I've had a few surgeries in the stomach area and have one partially paralyzed leg so I understand the toilet difficulties.
I ordered the relieve pro and menthol CBD theramu ointment. The stuff really really does work. So I want to thank you. I wouldn't have tried it if I hadn't gotten your honest opinion first. Hope you figure out the toilet. There is a over the toilet bar on Amazon I don't know how well it would work .. I have Polymyositis as well as all my other stuff. So I'm thinking of ordering it. If I do I'll let you know how it works.
Hey Christina, I'm so glad you're able to enjoy reading again! It's an amazing feeling to be able to do something you enjoy especially when you've gone so long without it. I felt the same way when I was able to paint after a year. I understand trying to detach yourself from your body, I actually went through a period having bad muscle spasms and knocking things over that I decided to refer to my body as a complete separate being and gave it its own name, haha. Elvis -Wilson threw that paintbrush across the room not me. Not the healthiest habit but pretty hilarious looking back on it. I still get called Elvis every time I knock something over! I don't comment often, but I would just like to say I love your videos, I love your personality and your outlook.I always look forward to watching your vlogs, you always manage to cheer me up when I'm going through a rough patch. Best of luck for your surgery, sending positive thoughts and good vibes your way xxx
Congratulations on getting off morphine. I know you are taking a break from Etsy but when you do get back to it I would like to request that your hedgehog water color picture be placed on there. Soooooooo cute! I hope you have a fast and easy recovery time with your next surgery. Cant wait for your next video.
Your painting was so adorable!! It must be so hard going through all the surgeries you have been having!! I need to start doing my meditation regularly again!!! I don’t have eds, I have fibromyalgia. I find your outlook amazing and made me think about my outlook! Plus I am fellow flutes!!! Good luck with your surgery if you have it before I see you next xxxx
I had gotten an elevated toilet seat with built in hand rails when I had my lumbar fusion. It was extremely helpful since both my knees don't like me. After having one of those once, I'll recommend it and get another myself!
Yay! Love your videos! I've been binge watching all your videos while Im recovering from surgery. I love your prayer tin and I think I will do the same thing. Thanks for your strength and positive attitude. I hope surgery goes super well for you!! ☺️
i'm loving your new glasses and so happy you're able to read again!! wishing you the best for your knee surgery and always sending you lots of love and spoons 💕🥄
I'm so genuinely glad I found your channel... I know I don't really know you in real life and such, but I really relate to so much of what you've shared, though I've been fortunate to have not been through so many surgeries and such, but I really adore you... AND WE'VE GOT SO MUCH IN COMMON, ACTUALLY! I love painting (mainly acrylic paint, though I really haven't painted in a long time, your hedgehog is ADORABLE, I LOVE IT! and watercolors are tricky, you're really good! And I play oboe (I don't have an oboe right now, but I still say I play it hehe), I've wanted to learn violin just cause... Seems cheaper to get one and such, but I don't have one... I definately don't have the air for flute, so good for you! :-D I've been doing singing, even though I really didn't like my voice, I've come to accept it and be ok with mistakes, and I'm proud of myself about that... You listed so many other awesome hobbies and I really would love to meet you someday (not in a creeper way, I promise... I'm also very much an extrovert, my bff is a total introvert though... I can't say that's really relevant, I'm sorry I totally ramble way too much)... But I LOVE YOUR VIDEOS... and you're "famous" now, since your friend recognized you from your videos, that's awesome, and I hope her surgery went well, and I'll be rooting for and praying for your surgery as well! Thank you so much for sharing about the mental health thing... It really felt so refreshing and validating and just... It was nice to hear how you spoke so openly about it and made it seem like such a "normal" thing, because it is... Everyone should pay attention to their mental health and their physical health! I've struggled with a lot of mental health challenges personally, mostly stemming from being abused from a very young age until I was a young adult, and even after that I've lived through other traumatic events, and I tend to be really really mean to myself about... Well, everything. And growing up, as the oldest kid, the only girl, and with one of my two brothers having severe special needs (autism, intellectual disabilities, and a seizure disorder), I remember back as early as 2-3 years old, seeing my mom unable to handle my brother sometimes and realizing that I needed to take care of her and my brothers, and... I'm trying to not speak mean to myself, I am just having a lot of problems focusing, so I'm genuinely sorry, I guess my point is just that I grew up in a situation where my needs (safety/physical needs as well as emotional needs) were not important, I was taught that I was only worth what I do for others, and that's been a continual challenge for me that I've been working at since I first went away to college... But being chronically ill /chronic pain etc is hard for me to accept, because I physically CAN'T push myself to be everything for anyone... And I honestly felt like, several years ago, when I was fortunate enough to be given SSI disability (which was before I had an EDS diagnosis or several others, so my physical issues were like, "bad joints", "chronic migraine", "celiac"... So it's one reason to be glad for all my psych diagnosis, haha, cause DID, ADD, PTSD... arguably a few others, idk, but they sound much more "impressive" than even my current medical diagnosis, so I feel like I would honestly be able, and delighted, to work with my psych issues, but right now my physical health is really... Challenging. So I'm really grateful that I'm able to exist from disability funding, even though at first I told myself I would only be on it a year or so... Now I realize how lucky I was to be able to do so much and push my body to do so much for so long. So at first I figured it was a blessing in disguise to have to slow down and not be able to work for a bit, so I could take some time for myself and learn that I'm not only worth what I do for others. And then I was like... "ok, I learned that lesson, I'm ready to move on now!" haha... But I'm learning to accept that I'm not able to do much of anything some days, and the challenge is to not get mad at myself for it. But you're right, and you just said it so plainly and simply, that of course having to be in bed rest isn't great for anyone's mental health... Sounds like a total duh, but it was nice to hear someone say it, even if that's silly... I'll silly and I like being silly ;) You also are really amazing, because while I can't say I've had to taper off of morphine or other similar drug (I really wish I had a doctor who would help me manage my pain, I'm looking, that's honestly been my hardest mental battle lately though, I'm 29 and I've always been in pain, but then it gets to a point where I feel like I'm. Losing myself and losing my life because the adrenaline from the pain and the pain and the exhuation are just all I have...today is a pretty good day with pain, so I'm glad for that, but I know there's so many issues that come with narcotics, too, and I've had to go cold turkey off of antidepressants (cybolta most recently.... That is hellish, sincerely, I wish they told you when you start those drugs how aweful withdrawl can be) or benzos before as well (xanax, I don't like to need it, but it helped with anxiety for awhile - sometimes prescriptions don't get filled when they should etc so then I'm in withdrawl, and I'm tapering down on xanax slowly, hopefully I'll be able to find something to help with my pain soon... But any medication withdrawl is really rough. And I've definately felt like I was dying before... I hope your body gets more used to things asap, cause every minute of the sickness of withdraw is agonizing, I wouldn't wish that on anyone... And I don't know what I just typed, I'm sorry, I'm not great at focusing on a good day, lol, and I was just upright for at least a couple hours and it makes me feel like my brain gets all fuzzy afterwards... I'm always telling my bff how "gravity is too heavy" which is silly, but it's totally true! My neck hates it haha... My head is way too heavy! ;) Sending all the love and comfort your way! And I'm curious to look into the Cbd stuff, I have a feeling it's really expensive though, so Meh. Thanks for sharing your journey with us! :)
I think it might help to get some grab bars on the wall to help you get off the toilet. It would make things safer. You can get them any where that they sell durable medical equipment.
I love 💕Bonnie’s “not contagious “ patch. So many people assume if you are wearing a mask or coughing it is because you are sick. I don’t know how many times I have to explain that I wear a mask to keep from cat hint whatever is in the air. It really threw one of my doctors for a loop when I asked for a mask after he apologized for having a cold. He ended up putting one one, and he was uncomfortable the whole time. He does not do procedures that would require him to wear a mask. It was actually kinda amusing to watch. 😷 Thanks for the pep talk on mental health. It’s too easy to forget how much our illnesses take on our mental health. 👍🏻 Always take time to take care of your WHOLE body. 🐾💖🐾💖🐾
You must have been in the future! (Friday March 29th?) You are the strongest person ever. One of my friends was diagnosed with EDS and I wanted to find some more which is how I found your channel. You are so positive. It makes me ashamed to complain about my banal ouies (cold sore, etc). I have a question about your port: when you access and deaccess it, does it scab over and bleed? It looks like your skin just grows over, but in your videos I never see any blood! All the best for your upcoming surgery and all around health!
Mackenzie Powell both are really great tips... I keep MENTALLY cleaning and organizing, haha... But I haven't had the energy to do much, so I'm always getting more behind and messy than I am organized... Someday!
I know this may be weird but if able to take some allergy meds sim to phenergan they really help with withdrawls but also when got the aches and leg and arm irritations where cant get comfy and want move them lavender baths help amazing i know you know that about lavender but sometime we forget that simple things can help alot
I've not been getting noti also would a walker help with bathroom difficulties something to hold as get up but i also want to say you are stronger than you think you have such a caring side that we see watching your channel you are an amazing young woman sending hugs from britain
It's interesting how our severe and chronic illnesses change and shape us mentally, I don't think it's necessarily all bad either. One example of that for me is because my body is so reactive to influences that many times I have no control over, eg severe allergies and when Dysautonomia springs
completely random surges in many of our fight or flight responses, on us. I found it was almost a pregrogramed or instingtual reaction for my body to tell my mind to not sweat the small stuff. Don't let everything or for me, sometimes anything to upset or even concern me. I don't even think there
was a consious thought process behind it. My body just knows I can't do stress any more. I am sick enough without it. Of course it could just be I am just too fatigued to care, LOL one foot infront of the other has to be enough, thats all I have left. Just my thoughts. LOL
I have had a similar getting on and off the loo, issue. Mine isn't surgery related with severe Osteo and Rhematoid in my knees, hips, and Ankylosing Spondylitis in sacroilliac's and lower spine. I find it difficult to sit down, mostly but sometimes getting up again. Here in Australia they are not
supposed to discharge you from hospital unless you have all the skills and equiptment to be able to cope with your activities of daily living before you are allowed home. I was given what the OT called an over the toilet frame. It basically raises the height of the toilet and has rails to push up
Hi, Christine I was wondering your situation w/ the bathroom. have thought about walkers turn it around so you can use it to lift yourself up or some kind of handles for support.
Thank you for showing us how to get up off the toilet with Amy I just bruised and sprained my knee and I have a brace that I wear that keeps my knee straight it is hard and I understand
Christina Doherty oh yeah, that is what I thought... something that just came to my mind, there are these toilet seat covers (you can clip on top of the normal seat) that heighten the seat, so getting up is easier, should not be to expensive on amazon :)
One piece of advice I'd give you: when accessing your port, wear a very..."minimal"? tank top. Like spaghetti straps and lower cut neck. This will allow you to see and do your own access much more easily without fighting with your clothes, all while trying to stay sterile! When you get comfortable doing your own access, you'll be SO glad you worked through figuring out how to make it work for you. I can't wait for you to be comfortable accessing, it will release SUCH a big stress point in your life! All the trips, and odd hours of needing accessed or deaccessed, you won't have to worry about arranging outside assistance. It brings such freedom!
I was wondering...is your toilet an accessible-style toilet? They are a higher profile. That way you're not trying to stand up from a very low position. Changing out the toilet would be an easy fix (along with some grab bars). I'd really hate to see you get hurt. Be careful you. And cute painting by the way. And I suck at eyeliner and false lashes big time.
Christina if you happen to read this,and I'm at liberty to ask; Where/ Who are your spinal surgeons??? I'm at point desperate for knowledgeable EDS physicians with desire and ability to take on a challenge. Advice is welcomed🌷
Bonnie is so cute! I agree. She should start an Etsy store. Her patches are beautiful. Thanks for sharing your week. I can’t believe that you are having surgery again already. I hope that it goes well and that it is successful in solving your knee and leg issues.
Wow, did I need that mental health encouragement today! Praying for your knee surgery tomorrow!🙏
Watching you learn how to make sure everything was still sterile and putting on sterile gloves made me remember my health professions class I took in high school.
Prayers for your surgery 🙏🏻💘🙏🏻. I wish I could come over and help you organize. A clean room makes such a difference. My daughter loves her weighted blanket.
I loved your hedgehog painting! ❤️
I’m so happy that you can read again! I couldn’t live without books. You are so wise❤️
The part where your nurse is showing you what to do was soooo interesting. I've always been medically curious so I love when you include clips like that 😊
Christina you are very great person and you don’t let your illness define you which you could ❤️
The “intimate” bathroom tip actually helped! Thank you!!
Hi Christina. Thanks so much for your reflections on chronic and mental illness. As someone who's dealing with several mental conditions, I can relate in many ways to your own strughles. I, too, try to keep a good perspective on things - I've got access to great medical care, and I've undergone very helpful in-patient programs. I am also sightless. I do try for mental illness and/or blndness not to define me. I know I am so much more than that - a vocalist / guitarist, a linguist, a pedagog, a sister, a daughter, an auntie to an adorable little girl, and a friend. (I hope a good one at that.). I thank you so mucb for reminding us to choose joy and to share your hope, vulnerability and essentially your whole being with us. I wish you all the best in your journey. Your videos have helped and moved me, and I'm sure you're making a difference in so so many people's lives.
Another hEDS person here, I had a surgery on my knee and had to keep my leg straight for about 8 weeks, with no weight bearing. For bathroom help, I used a toilet riser, it had handrails, and by raising the seat, I didn't have to lower myself down so far, which meant less effort to get vertical again. We rented ours from a medical supply place. It was easily moved aside for non-disabled people to use the toilet in the usual way. Great video, good luck for your surgery and recovery!
I'm so happy you can read again! 👍
Thank you so much for mentioning mental health as much his physical health. I suffer with both. Pretty sure my mental health got so bad because my hyper pots was misdiagnosed for over 10 years as well as my EDS. They kept telling me I was just overweight or I was just having panic attacks. So I assumed my heart rate was high all the time because of panic and I was tired all the time because of anxiety. You are so adorable and amazing. Thank you for sharing these slices of life with us. I’m trying today the same but I find it very hard. I think maybe my first or second vlog had tons of hate telling me I made up illnesses. I’m going to try again. You definitely inspire me. Hugs and best wishes on your upcoming surgery. 🙏🏻❤️
I was finally diagnosed with fibromyalgia this past week. I was able to order their relieve topical cream for a doable price thanks to you!! I did put your name as my referral!!! Thank you for being such an inspiration to have my own voice in my medical treatments and in my life. Keep up your amazing attitude!!
I know it is probably TMI, but your bathroom tutorial was incredibly helpful! I have been struggling with that due to surgery and loss of muscle and the way you explained it gave me a lot of good ideas to try! Sending you love and well wishes!
Fruitbat I totally agree. The info you gave us about getting up off the bathroom was a very helpful demonstration but due to having both knee problems I can't get my leg behind the I think it's the 90 degree bend but it really helped me to learn a better way so thank you very much for sharing this very useful and important tip. I hope this will help me to have less falls. I also love your little hedgehog it's so cute. I will be praying for you that everything goes well with your knee surgery I will be keeping you in my thoughts and prayers! I love your video's and family. Keeping you and your family in my prayers. Take care and God bless you all lot's of love from me kelli xxxxxx
im super sore and tired today but really busy so im watching this laying face down in the shower letting your calming voice remind me that im not alone 💖
a weighted blanket is mad expensive but you can make one for cheep. I am considering making one.
Yessssssss I so agree we are more than our illnesses and it’s easy to get lost in them but our mental health needs us to do more than just be our illnesses. I think that is why I share more than just videos about my health because I want to teach people that we are cool people with hobbies too you know? That’s why I love your videos I’m dying to learn to crochet and I bought myself a watercolour colouring book for my self care days. Good luck for your surgery sending much love xxx
Miss Adventure Ditto!
I figure it's nice to have the time to learn things, even though I really hate how much I feel stuck when I have to rest and I mentally would love to do so many things...
But, even when I'm stuck having to rest in bed, and am not even able to sleep from pain or feeling too dizzy, etc, but we live in a time where we can watch UA-cam and I used to read stuff online (I often have too many neurological issues to read) but there's so much to learn online with documentaries and everything... I've been able to learn so many skills, I've learned about how to use a sewing machine, my bff is AMAZING and got me a machine for an early birthday present, and the interwebs gave me the info to learn how to do much with it... I wish I could do it without having to be upright, haha, but there's so many different things we can learn, so thank you both for reminding me of how we have the opportunity to learn new things even if we can't do the same things I used to (I was in a cranky mood, thank you both for cheering me up!) :)
likeabunnie you are so welcome! You are incredible never lose that will to learn it will always keep you moving forward and not feeling like you are losing time to illness you know? Xx
HI
I'm from the UK - i watch and look forward to your vlogs weekly - every Monday i check for the new one .. You are truly an inspiration and courageous young women . I love your Vlogs and have learnt a lot from you . I hope your recent knee surgery went ok . Gob bless .
Claire (Dudley - UK)
Congrats on finishing your morphine taper! Just keep being kind to yourself as your mind and body adjust. You may continue to have some sporadic episodes of withdrawal for a bit and likely after your surgery, but know they are temporary and will pass. Good luck with your next surgery!
I love how Bonnie has a little bow tie on her cannula. That's so cute. I'm so glad EDS has brought you both together to bring each other strength when needed. Stay awesome!
I say that all the time. I wouldnt take away my lupus if i could, it has made me meet so many wonderful people! has made my life richer i feel! i appreciate everything so much more!
Sending prayers and good thoughts for your upcoming surgery ❤️
Your art is BEAUTIFUL!
On the loo I have a plastic insert which makes the toilet higher , I find I can get up of it easier with my leg straight xxx ps no comment required hugs
Cutest Hedgehog EVER!!!!!!!!!
Hi I just found your channel about 2 days ago and wow u are so inspirational and have such a warm heart. With everything u have gone thru and still are u don't let it beat u. Thank you for sharing it with us I am hooked watching ur vids and looking forward to the next one. I hope your knee surgery goes well x sending love and well wishes from Cornwall in the UK xx
I'm so glad you spoke up about mental health I'm manic bipolar and I'm super open about it to people that ask questions but I'm so with you on not wanting to be your illness completely upderstand that. Love your vlogs!
❤.. .u just made me cry as 8 just tralised 3xqctly where my mental health is.. that i notmally split myself *crappy body* and *me me*. Try to force "me me* to keep going whilst my body is falling/ failing me and ive just bren gett8ng angr8er and angrier with all chronic illness has done/ taken from me. My mental dis health has just crept up 9ver the last weeks etc. love you.thanks for caring and being my friend xxxx
Best of luck with your surgery, you a loverly person take everyday bit by bit xx
I slide down my wedge too. Drives me batty.
I like Bonnie’s patches.
I struggle with balance on chronic illness body maintenance stuff and all the other stuff.
Opiate withdrawal sucks. Hang in there. It does get better.
Learning sterile field is SUPER intimidating at first but as long as you are aware of where your hands are it becomes second nature!!!
It’s like a Snape bath bomb.
Katie haha I was thinking that! It's definately interesting...
LOL, "vile and awesome" is a perfect description :-D
Bummer it was hard to clean out... I can't say that I would enjoy that in my bath, but it would be fun for my little niece ;)
+likeabunnie Its out now, so its not permanent lol. I think it was just a thick oil. Its so nice on the skin, but it took a little scrubbing. There are some other colors though which may be a bit more forgiving 😊
I bark laughed when you said “sitting on the toilet” and put up the pic
Good luck for the surgery darling! I’ll be thinking of you xxxxx
Good luck with your knee surgery. You're in my prayers big time. I hope it goes well.
Might think about adding a arm rail or handle in front of the toilet the bathroom. This way, you have something to grab hold of in front of you, as well as on both sides of the toilet.
dad totally gets 5 stars! Pass them on to him!
Loved the toilet instructions - those will definitely be handy tips to know for someone! I just got diagnosed last week, so hello fellow zebra! :) Am loving watching your vids, and hoping to get some silver ring splints soon - they look gorgeous on you :)
After my knee surgery they gave me one of those potty chairs with arm rests. It worked out great because it raised me higher on the toilet so that took less mussel and energy to get up and down. Mine came with a bucket and a bottomless sleeve (the sleeve acts as a barrier from the toilet to the potty seat) it's like a bottomless bucket that sits under the potty seat and slides partially into the toilet. I never used the bucket because that's used for beside your bed if you can't walk to the bathroom. It worked great turning my toilet into a handicap toilet by just placing it onto my existing toilet no tools needed and you just have to lift it off the toilet when it's no longer needed. I felt much safer by having those arm rests to push myself up and my insurance paid for it. It also has adjustable legs on it that are easy to adjust.
Hi Christina, why don't you consider getting a raised toilet seat? I have one and it makes life so much simpler! Or you could try getting a toilet frame, which allows you to use your hands and arms to push yourself up, but that obviously depends on how much strength and stability you have in your hand and arm joints. You can buy either of these on Amazon.
Praying for you
Good luck with your surgery!
Great video as always! Huge props to your dad - so many times the awesome quite folks behind the scenes don't get an atta boy that they truly deserve! Praying for you next surgery and hoping it is a speedy recovery!
So lovely to see your smiley face... You are doing amazing hun with everything you are facing... I also really appreciated the toilet tips ha ha 😉 Very helpful.... Our EDS bodies & ailments are always changing, so great info to have up my sleeve for the next back/hip/knee issues. Sending love & really hoping the knee surgery goes as well as possible. Big hugs from Nicole xoxo
I hope the surgery goes well ❤️
I love your videos, Christina. You have a very appealing personality. Listening to your thoughts about mental health I was thinking how wise you are for your age and how deeply you think about things, when you suddenly said: “I’ll pretty much buy anything with a tassel on it!” That made me laugh. 😀 I do hope everything goes well in your knee surgery. I’m thinking of you.
It was so satisfying to my home health side to watch you even attempt to access your own port.
Good luck!!!
You are amazing young lady! Keep up the good fight and positive attitude. Love ya bunches. Hope You received and enjoyed the little care package I sent you. I love that you try so hard to help out everyone with the little tricks and tips you've learned. I bought bath tub gripstrips to put on my slippery floor in my bathroom. Sending positive thoughts and love foryouto feel better quickly from the morphine withdrawal, and from your up coming knee surgery.
Your fellow "zebra with the grey stripes"
+Teresa Elza- Fry Yes! I did get it! I even filmed it. The file corrupted and Im trying to fix it and include it in a haul video. But If I can’t get it back please know how thankful I am!!!! Every item was so perfect and unbelievably thoughtful. Its amazing how much you guys have gotten to know me 😊❤️😘💗
Have you considered a commode? It's higher than a toilet and has arms. Instead of using the bucket, place the commode over the toilet and use it that way. You can use the arms to push yourself up. I've had a few surgeries in the stomach area and have one partially paralyzed leg so I understand the toilet difficulties.
I wish you good luck with your upcoming surgery. You have been waiting so long for this! You are always in my thoughts and prayers. 😊😇🤳💪🙏
I ordered the relieve pro and menthol CBD theramu ointment. The stuff really really does work. So I want to thank you. I wouldn't have tried it if I hadn't gotten your honest opinion first. Hope you figure out the toilet. There is a over the toilet bar on Amazon I don't know how well it would work .. I have Polymyositis as well as all my other stuff. So I'm thinking of ordering it. If I do I'll let you know how it works.
Hey Christina, I'm so glad you're able to enjoy reading again! It's an amazing feeling to be able to do something you enjoy especially when you've gone so long without it. I felt the same way when I was able to paint after a year.
I understand trying to detach yourself from your body, I actually went through a period having bad muscle spasms and knocking things over that I decided to refer to my body as a complete separate being and gave it its own name, haha. Elvis -Wilson threw that paintbrush across the room not me. Not the healthiest habit but pretty hilarious looking back on it. I still get called Elvis every time I knock something over!
I don't comment often, but I would just like to say I love your videos, I love your personality and your outlook.I always look forward to watching your vlogs, you always manage to cheer me up when I'm going through a rough patch.
Best of luck for your surgery, sending positive thoughts and good vibes your way xxx
I am really glad you addressed mental health. I deal with both chronic illness and mental health issues. I hope that you are able to get some sleep.
I love to see how big ur UA-cam is growing ☺️☺️ good luck on ur surgery!! I’m keeping u in my thoughts and prayers 💗
You are always an inspiration. You make me smile!
Went from March 29th to March 24th for a wile there I was freaking out I missed a doctor's appointment on the 28th. Goodluck on your surgery.
Congratulations on getting off morphine. I know you are taking a break from Etsy but when you do get back to it I would like to request that your hedgehog water color picture be placed on there. Soooooooo cute! I hope you have a fast and easy recovery time with your next surgery. Cant wait for your next video.
Your painting was so adorable!! It must be so hard going through all the surgeries you have been having!! I need to start doing my meditation regularly again!!! I don’t have eds, I have fibromyalgia. I find your outlook amazing and made me think about my outlook! Plus I am fellow flutes!!! Good luck with your surgery if you have it before I see you next xxxx
Good luck with your surgery! You're so great at articulating such complex thoughts.
I had gotten an elevated toilet seat with built in hand rails when I had my lumbar fusion. It was extremely helpful since both my knees don't like me. After having one of those once, I'll recommend it and get another myself!
You make me smile everytime you post here or on Instagram.
12:42 ... your parents ❤️❤️
Yay! Love your videos! I've been binge watching all your videos while Im recovering from surgery. I love your prayer tin and I think I will do the same thing. Thanks for your strength and positive attitude. I hope surgery goes super well for you!! ☺️
i'm loving your new glasses and so happy you're able to read again!! wishing you the best for your knee surgery and always sending you lots of love and spoons 💕🥄
also i would buy 100 of the "not contagious" patches i need them for EVERY OUTFIT AND MOBILITY AID 😂
LOVE the hedgehog!! We had one as a pet a long time ago. I needle felt them and it is so fun!
Praying for You that Your surgery goes well the way You handle things is amazing You area remarkable Young woman God Bless You today and everyday
I'm so genuinely glad I found your channel... I know I don't really know you in real life and such, but I really relate to so much of what you've shared, though I've been fortunate to have not been through so many surgeries and such, but I really adore you... AND WE'VE GOT SO MUCH IN COMMON, ACTUALLY!
I love painting (mainly acrylic paint, though I really haven't painted in a long time, your hedgehog is ADORABLE, I LOVE IT! and watercolors are tricky, you're really good! And I play oboe (I don't have an oboe right now, but I still say I play it hehe), I've wanted to learn violin just cause... Seems cheaper to get one and such, but I don't have one... I definately don't have the air for flute, so good for you! :-D I've been doing singing, even though I really didn't like my voice, I've come to accept it and be ok with mistakes, and I'm proud of myself about that... You listed so many other awesome hobbies and I really would love to meet you someday (not in a creeper way, I promise... I'm also very much an extrovert, my bff is a total introvert though... I can't say that's really relevant, I'm sorry I totally ramble way too much)... But I LOVE YOUR VIDEOS... and you're "famous" now, since your friend recognized you from your videos, that's awesome, and I hope her surgery went well, and I'll be rooting for and praying for your surgery as well!
Thank you so much for sharing about the mental health thing... It really felt so refreshing and validating and just... It was nice to hear how you spoke so openly about it and made it seem like such a "normal" thing, because it is... Everyone should pay attention to their mental health and their physical health! I've struggled with a lot of mental health challenges personally, mostly stemming from being abused from a very young age until I was a young adult, and even after that I've lived through other traumatic events, and I tend to be really really mean to myself about... Well, everything. And growing up, as the oldest kid, the only girl, and with one of my two brothers having severe special needs (autism, intellectual disabilities, and a seizure disorder), I remember back as early as 2-3 years old, seeing my mom unable to handle my brother sometimes and realizing that I needed to take care of her and my brothers, and... I'm trying to not speak mean to myself, I am just having a lot of problems focusing, so I'm genuinely sorry, I guess my point is just that I grew up in a situation where my needs (safety/physical needs as well as emotional needs) were not important, I was taught that I was only worth what I do for others, and that's been a continual challenge for me that I've been working at since I first went away to college...
But being chronically ill /chronic pain etc is hard for me to accept, because I physically CAN'T push myself to be everything for anyone... And I honestly felt like, several years ago, when I was fortunate enough to be given SSI disability (which was before I had an EDS diagnosis or several others, so my physical issues were like, "bad joints", "chronic migraine", "celiac"... So it's one reason to be glad for all my psych diagnosis, haha, cause DID, ADD, PTSD... arguably a few others, idk, but they sound much more "impressive" than even my current medical diagnosis, so I feel like I would honestly be able, and delighted, to work with my psych issues, but right now my physical health is really... Challenging. So I'm really grateful that I'm able to exist from disability funding, even though at first I told myself I would only be on it a year or so... Now I realize how lucky I was to be able to do so much and push my body to do so much for so long.
So at first I figured it was a blessing in disguise to have to slow down and not be able to work for a bit, so I could take some time for myself and learn that I'm not only worth what I do for others. And then I was like... "ok, I learned that lesson, I'm ready to move on now!" haha... But I'm learning to accept that I'm not able to do much of anything some days, and the challenge is to not get mad at myself for it. But you're right, and you just said it so plainly and simply, that of course having to be in bed rest isn't great for anyone's mental health... Sounds like a total duh, but it was nice to hear someone say it, even if that's silly... I'll silly and I like being silly ;)
You also are really amazing, because while I can't say I've had to taper off of morphine or other similar drug (I really wish I had a doctor who would help me manage my pain, I'm looking, that's honestly been my hardest mental battle lately though, I'm 29 and I've always been in pain, but then it gets to a point where I feel like I'm. Losing myself and losing my life because the adrenaline from the pain and the pain and the exhuation are just all I have...today is a pretty good day with pain, so I'm glad for that, but I know there's so many issues that come with narcotics, too, and I've had to go cold turkey off of antidepressants (cybolta most recently.... That is hellish, sincerely, I wish they told you when you start those drugs how aweful withdrawl can be) or benzos before as well (xanax, I don't like to need it, but it helped with anxiety for awhile - sometimes prescriptions don't get filled when they should etc so then I'm in withdrawl, and I'm tapering down on xanax slowly, hopefully I'll be able to find something to help with my pain soon... But any medication withdrawl is really rough.
And I've definately felt like I was dying before... I hope your body gets more used to things asap, cause every minute of the sickness of withdraw is agonizing, I wouldn't wish that on anyone... And I don't know what I just typed, I'm sorry, I'm not great at focusing on a good day, lol, and I was just upright for at least a couple hours and it makes me feel like my brain gets all fuzzy afterwards... I'm always telling my bff how "gravity is too heavy" which is silly, but it's totally true! My neck hates it haha... My head is way too heavy! ;)
Sending all the love and comfort your way! And I'm curious to look into the Cbd stuff, I have a feeling it's really expensive though, so Meh.
Thanks for sharing your journey with us! :)
And all the best for your surgery
I think it might help to get some grab bars on the wall to help you get off the toilet. It would make things safer. You can get them any where that they sell durable medical equipment.
I love 💕Bonnie’s “not contagious “ patch. So many people assume if you are wearing a mask or coughing it is because you are sick. I don’t know how many times I have to explain that I wear a mask to keep from cat hint whatever is in the air. It really threw one of my doctors for a loop when I asked for a mask after he apologized for having a cold. He ended up putting one one, and he was uncomfortable the whole time. He does not do procedures that would require him to wear a mask. It was actually kinda amusing to watch. 😷
Thanks for the pep talk on mental health. It’s too easy to forget how much our illnesses take on our mental health. 👍🏻 Always take time to take care of your WHOLE body. 🐾💖🐾💖🐾
#SelfCareDay 🤗
Caught up on all your vlogs (and some of the other videos) 24 (ish) hours before the next vlog (hopefully) comes out.
Best wishes on you surgery 👍🏾
You must have been in the future! (Friday March 29th?) You are the strongest person ever. One of my friends was diagnosed with EDS and I wanted to find some more which is how I found your channel. You are so positive. It makes me ashamed to complain about my banal ouies (cold sore, etc). I have a question about your port: when you access and deaccess it, does it scab over and bleed? It looks like your skin just grows over, but in your videos I never see any blood! All the best for your upcoming surgery and all around health!
I wish I could help u organize! I love it. My tip is lables and don't keep things you don't need :)
Mackenzie Powell both are really great tips... I keep MENTALLY cleaning and organizing, haha... But I haven't had the energy to do much, so I'm always getting more behind and messy than I am organized...
Someday!
Good luck with your surgery. Stay strong:)
I know this may be weird but if able to take some allergy meds sim to phenergan they really help with withdrawls but also when got the aches and leg and arm irritations where cant get comfy and want move them lavender baths help amazing i know you know that about lavender but sometime we forget that simple things can help alot
You're an amazing person it'd be so awesome to meet you
Best advice for sterile gloves is keep one for practicing.
oh my gosh...do you have a wall filled with david bowie posters??? THAT IS AMAZING
I've not been getting noti also would a walker help with bathroom difficulties something to hold as get up but i also want to say you are stronger than you think you have such a caring side that we see watching your channel you are an amazing young woman sending hugs from britain
I love watching your vlogs so much, i almost wish youd do daily vlogs haha! 💖
Wonderful testimony , we are more then our chronic illness 😁 !
It's interesting how our severe and chronic illnesses change and shape us mentally, I don't think it's necessarily all bad either. One example of that for me is because my body is so reactive to influences that many times I have no control over, eg severe allergies and when Dysautonomia springs
completely random surges in many of our fight or flight responses, on us. I found it was almost a pregrogramed or instingtual reaction for my body to tell my mind to not sweat the small stuff. Don't let everything or for me, sometimes anything to upset or even concern me. I don't even think there
was a consious thought process behind it. My body just knows I can't do stress any more. I am sick enough without it. Of course it could just be I am just too fatigued to care, LOL one foot infront of the other has to be enough, thats all I have left. Just my thoughts. LOL
I have had a similar getting on and off the loo, issue. Mine isn't surgery related with severe Osteo and Rhematoid in my knees, hips, and Ankylosing Spondylitis in sacroilliac's and lower spine. I find it difficult to sit down, mostly but sometimes getting up again. Here in Australia they are not
supposed to discharge you from hospital unless you have all the skills and equiptment to be able to cope with your activities of daily living before you are allowed home. I was given what the OT called an over the toilet frame. It basically raises the height of the toilet and has rails to push up
on. I am tall but the OT set it higher than what I needed it to be and it solved the problem. Very little bending to needed to get up or down.
Hi, Christine I was wondering your situation w/ the bathroom. have thought about walkers turn it around so you can use it to lift yourself up or some kind of handles for support.
I need to meet Bonnie! I love the hedgehog is that for Alexa?
Every time I watch your videos it makes me miss you
Thank you for showing us how to get up off the toilet with Amy I just bruised and sprained my knee and I have a brace that I wear that keeps my knee straight it is hard and I understand
I didn't know you liked to bake!
17:49 Wednesday March 27th 😂😂😂 Not Possible. On another note, tomorrow (Tuesday, March 27th, 2018) is my Birthday!! YAYYYY
I wish I could come over and spend time with you. I love you.
If you happen to have crutches, you could also pull yourself up using them... that always worked best for me :)
+CC S I am not cleared to use crutches or a walker due to my 5 lb weight limit from my spinal surgery. So I cannot bear my full weight on my arms
Christina Doherty oh yeah, that is what I thought... something that just came to my mind, there are these toilet seat covers (you can clip on top of the normal seat) that heighten the seat, so getting up is easier, should not be to expensive on amazon :)
Christina Doherty Raised toilet seats for 20 dollars, those really helped me :)
U wrote a book omg yes
One piece of advice I'd give you: when accessing your port, wear a very..."minimal"? tank top. Like spaghetti straps and lower cut neck. This will allow you to see and do your own access much more easily without fighting with your clothes, all while trying to stay sterile!
When you get comfortable doing your own access, you'll be SO glad you worked through figuring out how to make it work for you. I can't wait for you to be comfortable accessing, it will release SUCH a big stress point in your life! All the trips, and odd hours of needing accessed or deaccessed, you won't have to worry about arranging outside assistance.
It brings such freedom!
Christina Doherty Haha, I hear you! Well, I hope it goes well for you. Much love!
You can always get a bedside comode , sounds gross, but a lot better than falling or being stranded on the toilet! Lol
U dont react from baths??? I get pots flare ups with it.i love lush
Christina look out you have multiple yous. Sleeping Christina, inside Christina, outside Christina LOL
I was wondering...is your toilet an accessible-style toilet? They are a higher profile. That way you're not trying to stand up from a very low position. Changing out the toilet would be an easy fix (along with some grab bars). I'd really hate to see you get hurt. Be careful you. And cute painting by the way. And I suck at eyeliner and false lashes big time.
Christina if you happen to read this,and I'm at liberty to ask; Where/ Who are your spinal surgeons???
I'm at point desperate for knowledgeable EDS physicians with desire and ability to take on a challenge.
Advice is welcomed🌷