You are so sweet Christina! I’m glad you liked your little package! You are so creative, and I loved seeing your bookmark DIY!

@christinadoherty3212

6 жыл бұрын

+The Frey Life Aww thanks love! Many many prayers as you navigate this difficult time of IVs and reactions. Let me know if there is anything we can ever do for you! 💜🙏

I am so on your wavelength about weird/creepy stuff that most people only like on Halloween! Your costume was so perfect. Watching you talk about your lung trouble was painfully familiar; my mom’s been having trouble with her asthma lately but it seems to finally be back under control. As for the zofran, shame on insurance companies for that kind of crap. I’m a cancer survivor and I absolutely agree with you that chronic illness (or at least the ones that effect the entire body and multiple organ systems) should be taken as seriously as cancer. I hope you get what you need, even if it takes a fight.

@christinadoherty3212

6 жыл бұрын

+meganer12 Glad to meet a fellow weirdo! 😂 Gotta Love halloween! I hope things are better for you now with your cancer! I love the see the word survivor after that word! 💕

never miss mary peter and ollie got all there stuff and i love everything

Happy 1 year! ♡

@christinadoherty3212

6 жыл бұрын

+Amanda Mroz Thank you!!!

Oh my gosh I can't believe it's already been a whole year since you started your vlog series :O I think I started watching your videos before you even started doing the weekly vlogs but I can't believe it's been that long. I just want to thank you so much for making these videos. There was a time where your videos were the only thing I felt like I could relate to and they helped me a lot during that time. I'm glad you are still going strong after all this time and hope you can continue making these great, cheery vlogs :)

@christinadoherty3212

6 жыл бұрын

+Josh Hittie You have definitely been here from day one! I can’t believe how much our little community has grown! Thanks for sticking with me all this time. I always love seeing your name pop up in my comments ❤️

That happened to me, I couldn’t get an EDS test because I didn’t have cancer. Is very sad. Happy anniversary. I have been following from the beginning. 🙏🏼💜💝💝💝💝

@scarecrowmax1192

6 жыл бұрын

That's so dumb! Those two are not at all connected!! I totally suggest fighting that!

@christinadoherty3212

6 жыл бұрын

+Lali Tea Very frustrating! I agree, don’t give up! They need to understand that though the diagnosis may be different the symptoms follow no such law! Nobody has a monopoly on pain and suffering

52 thumbs up for 52 weeks! Thanks for sharing your journey with us! I love your new watercolor, super cute in that frame !

@christinadoherty3212

6 жыл бұрын

+Moli Swenstad 😊😊😊

Congratulations on your 1year! I enjoy your videos so much. For some reason it's just relaxing to listen to your voice. I love your positive attitude and I'm sure you give a lot of people hope.

@christinadoherty3212

6 жыл бұрын

+Common Sense Thank you so very much! 💜

Amen sister! Thanks for all your videos. Congrats on your one year!

@christinadoherty3212

6 жыл бұрын

+samiamisme Thank you! 💜

Congratulations on one year of vlogs!! I'm sorry this past week was so darn hard with bad symptoms. Hugs!

@christinadoherty3212

6 жыл бұрын

+purr bugaloo Aww thanks! *gentle hugs back* 💜

congrats on one year, christina!! 🥄💪🏼 i'm hoping your appeal is approved and goes through quickly and sending you good vibes for a better week next week 💕

@christinadoherty3212

6 жыл бұрын

+agirlisariot Thank you so much! It looks like we may be in the clear with that one!

Happy one year of vlogging!!!!! X

@christinadoherty3212

6 жыл бұрын

+Maddy H Thanks! 🎉🎉🎉

Happy vlogversary! I pray things go your way with the appeal.🤞🏾

@christinadoherty3212

6 жыл бұрын

+scorpleeon Thanks so much!

Congrats on one year of vlogging!!

@christinadoherty3212

6 жыл бұрын

+Malena Wilson Thank you! 💜

I love your vlogs Christina. I go through a lot of the same things that you do. And you actually helped me with my tube feed formula I had a super hard time finding a formula that I could actually tolerate and I watched your tube feed video and learned about Neocate Splash and it has been so incredibly wonderful.

@christinadoherty3212

6 жыл бұрын

+Hilary Jane Oh good! Im incredibly glad to hear that! Its so hard to navigate that, isn’t it? We were really left on our own to figure it out. Thank goodness for neocate!

Christina, you are so awesome and I just wanted to let you know that.

@christinadoherty3212

6 жыл бұрын

+Lyme Life You are so sweet! Thank you! I love that I am able to be with you in some way when you need someone ❤️

Congrats on your first year in Christina. You have done a great job with it,

@christinadoherty3212

6 жыл бұрын

+NJSMKMMS Thank you! ❤️

You make such beautiful art! We have the exact same taste when it comes to colours and flowers and watercolour designs, etc; I love literally every bit of your room (from what I can see obviously)!

@christinadoherty3212

6 жыл бұрын

+chronicallyvegann Aww thank you! I do want to do a room tour soon, but first it need to be clean... which may never happen 😂

Your little flower painting is so pretty! It's perfect for the frame, too!

@christinadoherty3212

6 жыл бұрын

+Svenja M Awww why thank you!

Congrats on one year of vlogs!And on tolerating the fortified rice milk! Sorry it was such a rough week. I really hope your insurance reverses its decision and covers your Zofran. Sending positive thoughts!

@christinadoherty3212

6 жыл бұрын

+DarkBlue Matter Thank you! 💜

You can use a regular gravity bag with your pump if you take the air out, that is what I do. You just wipe the little end of the bag with alcohol and use a needle and syringe to draw out all of the air! Make sure there are no bubbles and then hook up your tubing like normal! It is nice because then you don't have to worry about refrigerating the bags!

@christinadoherty3212

6 жыл бұрын

+Sara Jane I don’t think that would work. I have all the saline bags, but all I have for tubing is with the flow dial and the pump is only compatible with the tubing that has the special adapter thing that locks into it. Theres not really a spot for me to just run tubing through.

Yes the frey life is great and i love them!

@lorinewcomb4717

6 жыл бұрын

Maybe your sissy didnt want to be filmed.

@christinadoherty3212

6 жыл бұрын

+Lori Newcomb Hahaha she is definitely a camera lover, but everyone has their moments. It was a bit of a payback for all the the millions of embarrassing snap chats of me that have been sent 😂😂😂😂

I can't wait for year two of vlogs to begin, it's so incredible that you've done all of these!! I really hope your insurance company is more willing to work with you about your meds, it's ridiculous to say that because something isn't cancer it doesn't require certain medications like cancer is the only severe illness in the world. 🙄Anyway, I hope that this week is a better week for you and you can find a way to avoid the hives. Love and Spoons!!

@christinadoherty3212

6 жыл бұрын

+Dana Max Thank you so much love! you have been here from the beginning. Can you believe its been a year? Yikes!

Happy one yr!!!! I love watching you! I would love a live stream! Big hugs from Illinois.

@christinadoherty3212

6 жыл бұрын

+Shannon Curtin Thank you! 💜💜💜❤️

You are amazing and an inspiration You have such a positive attitude with all You go through congratulations on vloging a year sorry Your new neck brace gave You hives praying that everything works out with Your medicine and the insurance sees that You need it it's sad that insurances only see the cost and not that the person needs it no matter what illness they have thanks for vloging God Bless

@christinadoherty3212

6 жыл бұрын

+Paula Castle Thank you so very much! 💙

Congratulations on completing your first year of vlogging!

@christinadoherty3212

6 жыл бұрын

+Lois Cassels Woot woot! Thank you!

Your opening "rant" about healthcare-yes!!! Also your hair looks great!

@christinadoherty3212

6 жыл бұрын

+MarVi Shumaker-Pruitt Why thank you! 😊

Happy 1 year vlog averssary!🎉 So happy you decided to share your journey with us. Love the tip about the peppermint oil and mouse 🐀 and how it now smells like you live in a candy cane factory lol! ❤

@christinadoherty3212

6 жыл бұрын

+blackeyedbutterfly Aww thanks for coming on the journey with me! ❤️

Albuterol always makes my heart feel like it's about to jump out of my chest so I switched to Atrovent. I unfortunately, still have the heart palpations from it and I always feel like passing out but it is so much less than when I was on Albuterol. I'm also on Remeron for my depression and for my gastroparesis. Surprisingly, it's helped me tremendously. In May of '16 (before my diagnosis in August of '16) I was 77lbs and May of 2017 I was 95 lbs (which has stayed the same). Happy Vlogversary! If you ever get a chance to come to the West Coast I would love to do a vlog series with you! Much love to you Christina!

@christinadoherty3212

6 жыл бұрын

+Forever Rose Ugh albuterol was terrible! I would always faint from the tachycardia. Im now doing the levalbuterol, like you said, still shaky, but big improvement! And thank goodness for remeron! Careful what you wish for! Im totally up for a west coast road trip! 😉

Congratulations on a year! 🎉🎉🎉 Also, I love the les mis shirt

@christinadoherty3212

6 жыл бұрын

+Rachel Leeds Thank you! I just got it, I saw it and just had to have it!

Firstly I love your Tim burton things he rocks I love all his movies! I’m sorry you are struggling, I am too I think the change in weather to autumn is attacking all the spoonies! Sending you lots of love and I hope things settle for you soon xxx ooh and happy one year vlogaversary xx

@christinadoherty3212

6 жыл бұрын

+Miss Adventure Im glad (and not glad) that im not alone. I feel like we are all zombies. Hopefully the ragweed at least dies out soon.

@BeverleyButterfly

6 жыл бұрын

Christina Doherty yes it that strange thing where it’s nice to know you aren’t alone

Hi Christina! Congratulations on 1 year vlogging! I don't have EDS but a friend of mine does. You are so spunky and positive I tend to forget how many troubles you have. Do you think you could do a run-down at some point of all the health troubles you have? At any point, what aches and pains do you have? I am realizing that I am very thankful because I don't have any pains unless I am sick and it is almost impossible for me to imagine how you get through daily life with so many pains!

@christinadoherty3212

6 жыл бұрын

+somethingsmatter Thats a good idea, I guess at some point I should make a list. Its a fine line for me, I like to stay away from labels just for the point of labels, but then again it makes a big difference to have the diagnoses when trying to get treatment and accommodations. I may very well make a video on that someday. Thank for the idea!

Hi Christina! I don't think I've ever commented on a KZread video before... Anyways, I have followed you since close to the beginning, and I just wanted to say that I love your positivity and attitude toward life. I don't have a chronic illness but I am a special education teacher and I'm always looking to learn more about how medical issues can effect people so I can be more sensitive and understand a little better but I look forward to watching your videos every week because of your attitude. I love how you find little things to find joy!

@christinadoherty3212

6 жыл бұрын

+Jess Farmer Aww thank you! Im honored to be your first comment! I am so very thankful for people like you! Thank you on behalf of all of us for taking the time to understand us as people. So often we are “patients” “pupils” or even “clients.” But I think sometimes people can forget that we are people first and foremost. There really is so much that one can do in life, even if they have to do it a bit differently 💜

@jessfarmer7377

6 жыл бұрын

Christina Doherty you are so much more than just a patient! Everyone is so much more! Thank you for taking me with you on your journey through life! Your positivity has really helped me grow, because there have been times were I have thought that if you can be positive and go with the flow of life with the your everyday challenges I can too! Thank you again! PS. I got overly excited when I saw that you responded! It made my day!

So proud of your steps forward for EDS and really speaking out for us. I'm actually fighting for my diagnoses now and would love to make strides for EDS and other comorbid diseases!! Your vids inspire me to make my own!

@lulusgoodjuju

6 жыл бұрын

How old are you? And is there an email or anything so i can contact you ?

@christinadoherty3212

6 жыл бұрын

+Lucy Ennis Thats awesome! Definitely get out there! We need as many voices as possible! Im 21 (for another month) and my email is always at the very bottom of my description box 💜

❤️

@christinadoherty3212

6 жыл бұрын

+Cynthia Johnson 💜

happy anniversary! And now that I see the rice water I feel like an idiot coz I never send you my home made recipe... this stupid brain fog. I´ll try to remember it tomorrow (since my mom is the expert) and let you know on IG dm. And Gosh, Christina God bless the minute you decided to do this vlogs and open up your life and heart to us... I feel such a strong bond with you, you were the hand that help me take my 1st steps when I got my diagnostic of EDS and you still sacrifice hrs of sleep to talk with me when something is bothering. You hold a dear place in my heart.

@christinadoherty3212

6 жыл бұрын

+sayurimei Thank you so much love! It always means a lot to have your support from down south! 💜

Hi Christina, I have a couple questions I wanted to ask you. :) Do you suffer from chronic fatigue? You just seem so productive, going to all these appointments, keeping up with PT, making, selling, and packaging your art/jewelry, vlogging every single day, editing and uploading these videos every week, and I just wonder how you do it?? You seem to have much more energy than I do. I have EDS, POTS, and MCAD as well, but the majority of your symptoms are much worse than mine. Though, my chronic fatigue in particular really kicks my butt and keeps me from being able to do much at all because I'm just constantly exhausted. I had to stop going to my physical therapy appointments because I just wasn't able to make it in often enough for it to be helpful, and wasn't able to keep up with the exercises at home. My personal goals include things like managing to brush my teeth every day. Granted, I suffer from chronic migraines as well, which take huge, frequent chunks out of my life where I'm unable to do anything at all, and from what I've seen of your videos, you don't get migraines. If you suffer from fatigue like this too and are just really good at coping with it, or if you had chronic fatigue in the past but have found things that help, do you have any advice? It just baffles me that you have such severe symptoms like allergic reactions, frequent dislocations, have had so many surgeries, have a feeding tube, go to frequent physical therapy appointments, etc. but still seem to have energy and manage to keep up with everything in your life so well. Do you take any medication to help with your energy levels?

@christinadoherty3212

6 жыл бұрын

+Dusty Bones Hey there! Yes unfortunately I do suffer quite a bit with chronic fatigue. My videos really only show maybe a half hour pf my week and they pretty much capture all of the action lol. I still do spend most of my day in bed, I struggle to sit up for much more than a half hour at a time, so I do still spend most of my time laying down. My jewelry luckily is a project that I can do from bed. I and braced in with pillows and use prism glasses to see down. And I pretty much sleep the whole way to PT and back. Its definitely a big work around. I can totally understand the teeth brushing thing. For me its showering... its takes 3 days of preparation and usually an entire day of laying in bed conserving spoons. It all has improved a bit though as I have addressed some of the other health issues I have that were sucking up my energy and finally meeting my calorie goal for my feeds helped. Also a bit help was finally treating my low cortisol levels. That is something to look into. I hope as I continue to build strength through healing and PT it will continue to improve. Our bodies are just so tired out by everyday things and strengthening the muscles (slowly and carefully) can help quite a bit. Hang in there! Its hard and it stinks not being able to keep up with your peers. But there is hope. The last couple years I never could have done what I do now. I couldn’t even walk to the bathroom somedays 💕

@discoverwithdusty7942

6 жыл бұрын

Thanks for responding! It's a bit of a relief to hear you suffer from such bad fatigue as well, that makes me feel like there's hope I could work my way up to being able to get out more often and keep up with physical therapy as well since you somehow manage. :) I can definitely relate to the shower thing, haha cutting my hair short seemed to help since showers are a bit less daunting without so much hair to wash. I've been able to shower as often as twice a week nowadays, with a shower chair of course. Do you have an at-home PT routine, or are your exercises limited to appointments at the moment?

You are so right about how we should be treated and not having to fight over something so simple as Zofran. You need what you need. Its fine to be weird but also enjoy the non-weird. Glad you found a drink that works, but remember to take breaks from it so you don't develop weird reactions. Try a fabric around your neck that you tolerate under your neck brace after you clean the pads. , sorry you had those hives. As for your insurance issue, try complaining to the attorney general/your representative, they can help speed things along. I would do your local rep first, definitely get family support. We have done this with great success when our appeals don't work. Keep things well documented as best as possible and see if Zofran has patient helps to not keep you without meds. Praying for the best and glad you connected with Mary, she is sweet and very generous. Yes we are friends in a unique way God has connected us. For decades I have suffered with little understanding and support until a year ago. Thanks to Chronically Jacqui for helping so many of us understand and organize our issues and share. Blessings.

@christinadoherty3212

6 жыл бұрын

+Ana Larson Thank you! Yeah Im trying to take breaks on and off with the rice milk. Especially if I feel like I have a low threshold that day. I hate that we can develop reactions to things we have too much of. It creates quite the vicious cycle

@analarson2920

6 жыл бұрын

Totally hear that.

I have chiari malformation and I can DEFINITELY feel the weather differences from day to day!

Happy 1 year!! Btw, had no clue about brain sinuses. And I also hate my inhaler. Ugh. Always makes me feel awful, except breathing is also kind of nice. Current love is the "breathe" essential oil blend from doterra (only adding brand bc I imagine it varies). Sometimes I can avoid using the inhaler if I catch the attack early enough.

@christinadoherty3212

6 жыл бұрын

+Ailing Owl I have been using a breathe blend as well that had been helping! I don’t think its doterra, I will have to look. But its so nice when you can manage something naturally! ❤️

Congrats on your vlogaversary!! I always look forward to your videos and am so glad we met each other :-)

@christinadoherty3212

6 жыл бұрын

+The magical zebra unicorn Im so glad too! Thank you for coming along on this journey with me. Heres to another year! 🍾

Happy Vlogaversary :)

@christinadoherty3212

6 жыл бұрын

+E Skaarup Thank you! 💜💜💜💜

usually I'm one of the first 100 people to watch your Vlogs but I've had a really rough week but it's taking me till today to finish your vlog I only had 2 trick or treaters this year and I asked both of them to come LOL I don't know why I didn't have any I hope they get your like situation figure it out I always enjoy watching your Vlogs they always put me in a better mood when I'm not in a very good mood thank you for subscribing to my channel it means the world to me I was so excited I was jumping up and down because I've been watching you for a long time and you are the reason that I have been pushing for a diagnosis of EDS instead of just assuming and ignoring because of my doctor's not caring thank you so much for taking the time to make this video and all of your videos I hope that you have a great week and I can't wait to see you next week

@christinadoherty3212

6 жыл бұрын

+alex living chronically Aww thanks so much love! Hang in there! I feel you on the trick or treaters! I thinking of just bringing a lawn chair and some candy to a neighborhood a few blocks away and setting up shop next year 😂 I just want to participate gosh darn it!

@Lifeisastory95

6 жыл бұрын

Christina Doherty i stepped out of my house yelling that i got the good candy XD noone came. i think ill make a little shop too :D

FEEL BETTER 🎀❤️💛💚💙💜🖤🏵

@christinadoherty3212

6 жыл бұрын

+Hannah Stevenon 😘❤️❤️❤️❤️

Oh my goodness. Your family apparently doesn’t like you vlogging them. 😂 Haha. I don’t vlog, but my family doesn’t like me filming them either. So nice to go on another week with you and a WHOLE YEAR!! Woohooooo! 🎉Thank you for taking us with you. I can’t tell you how helpful your vlog has been in my personal life, keeping my spirits up and giving me lots of helpful info to help fight these chronic illnesses.

@christinadoherty3212

6 жыл бұрын

+Emilie H Hahaha my sister loves to ham it up for the camera but only on her terms. She was not in the mood. 😂

I’m stealing that blue sweatshirt

@christinadoherty3212

6 жыл бұрын

+Lauren Doherty Keep your paws away from my sweatshirt and out of my room! 🤨

I have also have a bad reaction week. It has been chilly here in England, and we had Bonfire night the other day. The smoky air is not good for my asthma and allergies. My eczema has also flared back up. Guess it's time to go back on the immunosuppressants.

@christinadoherty3212

6 жыл бұрын

+Maya Bewsher Oh boy... Im so glad we don’t have bonfire night here lol The 4th of July is bad enough with all the firework smoke and powders

Hi! I noticed you don't have a "z stat chamber" extension on your inhaler. You should see if you can get one the next time you see your doctor they are sooo helpful at making the medication work properly (and sometimes help with less side effects!!)

@christinadoherty3212

6 жыл бұрын

+davielle lauch I actually do have one somewhere! I definitely will be using it when I find it. Im so used to nebulizing that Its packed away somewhere with other medical supplies.

Sorry Christina, I know you talked about the newish grey thumb brace before but I wonder if you have the details about that still. I have no idea what Vlog that you mentioned it. Thanks so much in advance.

I had a rough week full of MCAD reactions and POTS flare ups and EDS pain when I'm still recovering from my kidney infection from a week and a half ago. Love the Frey life! Tomorrow I'm being accessed in mg hand I'm guessing. I'm pushing and advocating for a port cause I'm running out of veins (or at least a PICC) I ha e to buy so much medical stuff I'm thinking of letting my family know that's what iwant for Christmas. DME stuff happy vlogaversary!

@christinadoherty3212

6 жыл бұрын

+Tamber Grable Hang in there! I know its hard, you are dealing with so much 💜 good luck with you advocating for a central line! I hope someone is willing to listen

"For chicken that pup will wear chaps and stilettos!!!" ;)

When your pump beeped at like 14:25 ish I looked over at my pump and then remembered I wasn't hooked up 😂

@christinadoherty3212

6 жыл бұрын

+music dreamer Hahaha this happened to me with someone else’s vlog this week! Too funny! Others say the beeping brings flashbacks of days past. I hope we can get there someday 😉

Things we hear from our insurance companies!! Mine said that being chronic means that it is a waste of 'their' money to pay for certain services that i need. ugh.

@christinadoherty3212

6 жыл бұрын

+Dawn Laughlin Lol good thing thats not ‘their’ job... oh wait!

That inhaler makes me all shaky too!

@christinadoherty3212

6 жыл бұрын

+InviDoll Its awful! If you are on albuterol then maybe give levalbuterol a try. I still shake, but its a lot better

@InviDoll

6 жыл бұрын

Christina Doherty Thanks! I've thankfully managed really well without needing to take it, but it's one of those things you've just got to have around...

Happy Vlogversary :) Can I just say I like horror movies too. On Halloween, partner and I watched movies too, you not weird. Sorry to hear about the insurance problem. Hugs

@christinadoherty3212

6 жыл бұрын

+loopysos Thank you! And yay for horror movies! 👻

I recently had a battle with my doctor and insurance company trying to get a medication approved. Whew! That was exhausting! I ended up on an alternate med, but I know that is not an option for you. Can you request a Peer to Peer review (Mary Frye mentioned this in a recent Vlog) so that your doctors and the insurance doctors can review your case? I am saying prayers for you!! I know how hard it is. I am battling my insurance company to get treatment for Skin Cancer (Squamous Cell Carcinoma) because my insurance doesn't cover surgery. Bah! It's so scary sometimes!

@christinadoherty3212

6 жыл бұрын

+Beth Wade We are definitely going to fight it. We just have to. They won’t like how often they will be paying for ER visits without it haha. Hopefully they will realize that

where did u get those earrings that you are wearing in this video? I have been thinking about it for a while but never asked 😅. they look awesome ^^

@christinadoherty3212

6 жыл бұрын

+Tindra456 They were from American Eagle years ago. They are my favorite! 💗The silver is wearing away now and I’m so sad!

Insurance companies have no business practicing medicine😡 Have you used sharpies and rubbing alcohol? That's really fun to work with too😉 Outline your design with whatever color Sharpie, then paint over with at least 70% rubbing alcohol. It diffuses the color and gives you a watercolor look. 💜🦋

@christinadoherty3212

6 жыл бұрын

+Chronic Butterfly Ohhh that sounds like fun! I may just have to try it! 😍

my insurance says the exact same thing with my zofran!!! i’m prescribed 6 a day, and they only pay for 3 a day. and it’s just too expensive to pay out of pocket for those extra three. so i just have to really “hoard” (for lack of a better word) it for the really bad days. but they will pay for almost every single opiate i’m prescribed. as for the neck brace, can you put the old pads into the new brace? even if they are glued in the old one, you can use a glue that you tolerate to put the old ones in the new brace. have you ever tried an anti anxiety such as ativan for the nausea? ativan worked pretty good.

@christinadoherty3212

6 жыл бұрын

+Jaclyn Jenkins I washed the pads down and luckily all is good! Thank goodness. I wonder what kind of chemicals were on it 🤨. And I am on a low dose of remeron. Its mostly for sleep but they said it’s actually great for nausea and anxiety as well. Not sure how much nausea it helps with, at this point I don’t know how I would be without it, but it’s definitely saved me in the way of sleep

I am allergic to the chemicals they put on new fabrics. They give me hives. I always have to wash everything before I wear it. And no perfumes, softeners or smelly chemical detergents. Hope you feel better soon ❤

@christinadoherty3212

6 жыл бұрын

+Linda-Marie Hamrin Its such a shame they do that. I wish people thought more on patients comfort and health when designing these things. I hope they aren’t cutting costs with glues or something like that. I have never has this issue before. And I can only imagine how problematic it would be for our whole community if they were using new cheaper chemicals

@Luma994

6 жыл бұрын

Christina Doherty Money rules the world, I'm afraid. Maybe you could contact the place you got it from or the people that make it and ask if they have changed anything between the two. Tell them about your problem, maybe they will look into it or think of it next time they change something. Making them aware could be a start. ❤

Could you maybe add a tiny bit of flavouring to the rice milk? So you don't get bored of it? Xx

@christinadoherty3212

6 жыл бұрын

+Bella I don’t have anything that I know I can tolerate just yet. I actually thought of adding salt lol. I guess its fine, its not so much for enjoyment yet as it is preparing my body to reintroduce different foods

I have bilateral VP shunts and always knew they helped drain fluid out of my brain but never realized they could be in sinuses in my brain. So strange! And my shunts basically work like your stint in that really only one needs to work. I just have 2 because the one was having issues when I was a baby. Anyway, I just thought that was interesting. 😆😜

@christinadoherty3212

6 жыл бұрын

+Sarah Poison Wow that is interesting! A lot of my friends have shunts but I have never heard of someone having bilateral VP shunts. That could actually really be a help to a friend of mine. But is one not actually draining? They just left it in since its better than making you go through removal, or do they both still drain?

So since I just recently been diagnosed with EDS my friends and family defiantly are in denial about this. They believe my symptoms aren't that bad. Any advice?

Dude! We need to stop having the same weeks!!! My pain management doctor doesn’t know what to do with me anymore and I got told at my appointment that I failed everything that they know to do for chronic pain (no, really, I’ve never been told that I’ve “failed” so many times in my life.) including non narcotic meds, anti inflammatory, pain patches, alternative therapies, tens unit, heat, ice, and nothing helps other than narcotic pain meds and because of my gastroparesis I haven’t been able to keep most of what I take in by mouth aka everything other than a few sips of Gatorade and some of my meds and I’m not absorbing most of them especially my extended release morphine and muscle relaxers and after being up all night for multiple nights due to the pain and spasms I looked into so many other procedures and other things but all I got was “we don’t do anything like that unless you have cancer”. Plus my GI office is really not understanding that I am not keeping any food down and that my Iv zofran is not helping me anymore so I don’t know what I’m going to do anymore. I’m the same way with my pain so for me to say how much pain I’m in and especially for me to cry about it which has been happening a LOT lately...I just feel so hopeless, like nobody wants to help me or cares about me because I don’t have cancer. I just feel so invisible. Even in the spoonie community I don’t know how or where to fit in and make friends. I never know what to say or who to talk to lol! But anyways, I’m sending you so much love and prayers and spoons 💖

@christinadoherty3212

6 жыл бұрын

+Mandie Zangora I am so so sorry. The healthcare system is failing you and many others. Unfortunately there are people out there who abuse a good thing made to help people, and that really affects the ones who really need it. Are they denying IV pain meds? What about a pain pump? Once again, im really sorry!

@MandieZangora

6 жыл бұрын

Christina Doherty yup, I asked if I could try an intrathecal pain pump so I can get relief by using a fraction of the narcotics that I’m on now but it’s not cancer so I don’t deserve it and I brought up Iv ketamine as well cause I’ve heard it’s helped others with chronic pain but the doctor I got was just another automaton spouting how narcotics are only good for people with cancer and the only way my pain is going to get better is if I go off it and do yoga and acupuncture...but she wasn’t even interested in my medical history or the fact that I’ve tried going off narcotics 3x now and it’s only made the pain worse and I’ve almost gone into shock and died because of it 🤦🏻‍♀️ She literally just kept talking about how I just need to get off of my oxygen and Iv fluids and go to a pain rehab program to retrain my brain and that will solve all my problems but she didn’t understand that the part of the brain she wants to retrain is what my geneticist is messed up (hypothalamus) and that I also have irreversible nerve damage from joints subluxing and dislocating daily. It’s just so frustrating and defeating. I’m trying so hard to get the pain under control myself and I’m doing everything they’ve said to do but if anything it’s only made it worse but they choose to believe that I WANT to be on all these medications and that I don’t want to do the work to get better but if they actually looked at my history I’ve tried everything they’re saying to try multiple times. Plus the fact that she just thought I could deaccess my port, take off my oxygen and run to a program in another state was ridiculous and insulting because again, I wouldn’t be on it if I didn’t need it. Anyways, thanks for letting me rant and sorry it took me so long to see the notification for this 😂!!!

I have that same dragon mask! My machine is also a penguin haha

@christinadoherty3212

6 жыл бұрын

+Megan Smithers Okay well I an ridiculously jealous of your penguin machine

@MeganSmithers

6 жыл бұрын

Christina Doherty it's seriously the cutest. I'm almost 20 & I would still choose it over any other one if given the choice

I had to fight for 3weeks to get an epi pen refill. For a person with mast cell disease. I actually had to fight over zofran as well.

@christinadoherty3212

6 жыл бұрын

+Katie That is so ridiculous! Its insane how hard they can be to get and how expensive. Glad you have one now, hope you never need it ❤️

I pretty much fall apart every day lol docs won't take me seriously 😅

I wish you so much positive energy as your videos give it to me... You inspire me to stay positive and humble throughout all these struggles and to always be our own advocate and enjoy our weird and creepy sides... I am very thankful to be part of this family :)

@christinadoherty3212

6 жыл бұрын

+CC S Aww thank you! I am so glad you are too! 😘❤️

!!!!

The 25th anniversary music box is on eBay for $1650.00. It's absolutely stunning!!!!!

@christinadoherty3212

6 жыл бұрын

+Bulldog Mom Oh jeeze! Well looks like I may be making bank someday if I ever decide to clean house 😂

@mayabewsher6987

6 жыл бұрын

POTO? If so, I need it. I am lucky that I get to see Ramin and Sierra perform live this December. I might die of excitement before then.

I saw a specialist pt for the first time today but she doesn't want me using any braces at all... But my knees hyperextend constantly and how am I supposed to heal after the many injuries I get if I don't support them while strengthening? Help

@christinadoherty3212

6 жыл бұрын

+Bee Taylor I wish I had a straightforward answer for you! Its a hard balance with PT, strengthening, and support. Your PT probably wants you to strengthen the muscles so that they can support the joints instead of the braces and probably wants you to learn normal range of motion an proprioception on your own. We work on that a lot in PT and that is why we are so extremely slow to brace. But if you feel like your joints are unsafe and you are prone to injury them you have every right to speak up. I would suggest the compromise of doing your sessions without the braces where they can keep an eye on your form, and maybe sparingly around the house but using the braces when you go out and need protection and functionality.

@beetaylor1461

6 жыл бұрын

Christina Doherty thank you! I absolutely love your videos btw, they really keep me going :)

Sounds like the floor under your room doesn't have any (or very little) insulation.

Oh my medical nerds.

@kaylabarnes

6 жыл бұрын

I thought for sure you were gonna say "as always, I will see you next week." Haha!!

Are you sure it's not the rice drink that gave you hives.

Have you heard of Edward Gorey? An illustrator. I think you would like his art and books.

Nebulized cromolyn was discontinued too? Wtf.

@christinadoherty3212

6 жыл бұрын

+ReineDeLaSeine14 A friend of mine recently told me that it is available in some pharmacies now. I guess there was some kind of shortage? I would ask you local pharmacy if they have it. Im going to be asking around our area

Passive aggressive rug war lol

@christinadoherty3212

6 жыл бұрын

+Sarah Camley I would just like to point out that I have won 😊 I just got a new rug! And it makes me smirk that its looks so much like the old one

I’ve been having insurance issues too. They don’t want to cover my wheelchair because I walk inside my house.

@christinadoherty3212

6 жыл бұрын

+marie wikiwaka That is ridiculous! Im sorry! I hope you are fighting/fought that. For so many of us the whole point of the chair is to be able to get out of the house! How incredibly stingy/uneducated that is. Wishing you the best! 😘

@mariewikiwaka3851

6 жыл бұрын

Christina Doherty We went through all of the appeals short of a lawsuit. Eventually it came down to going to court or paying out of pocket. My family was in a place where we could pay for it, but it’s really not about the money, it’s the fact that my insurance doesn’t value my ability to leave the house.

I've had chronic nausea for the past year-- I'm 17 and my doctors can't figure out what is wrong with me (hence undiagnosed) but the only thing that makes everyday tolerable is zofran (I've tried 5 other medications and about to start a sixth) since it takes the edge off. My insurance company initially would not even cover the amount of 4mg tablets I needed, and said the same thing yours did about not having cancer or AIDS blah blah blah, which is total bogus. Anyways, my doctor found a little loophole and prescribes me 8mg tablets. This way I can take half a tablet (4mg) three times a day and I haven't had any problems with my insurance company since. Maybe that's something you could look into, unless of course you're taking 8mg tablets already.

@christinadoherty3212

6 жыл бұрын

+Izzy Waldorf unfortunately i’m already on 8 :/ But I have hope that we can fight it. It may be foolish hope, but hope all the same!

I don’t think that’s creepy. And also I’m off watching Beetlejuice now :)

@christinadoherty3212

6 жыл бұрын

+Mia B. 😊 Gotta love it!

Are you on a steroid inhaler? My mast cell allergist has me on symbicort, which helps reduce inflammation in the lungs.

@christinadoherty3212

6 жыл бұрын

+Daniel West Im starting back on flovent this week. Im not sure its going to be the best one for me but I have been on it before so at least I shouldn’t react to it

Could you buy the medicine out of pocket by visiting the companies website? I know most have coupons you can use.

@christinadoherty3212

6 жыл бұрын

+Jessica B Its extremely expensive out of pocket, but the good news is that it looks like we may have won on this one!

Life with needle in your chest? Right?

I would love to see you guys all put together a video and splice it all together into one... give your reactions to the stalkers (don't be upset, it's about them, not you), but just have an in your face answer. We ALL have been bullied, esp my older generation before "politically correct" was ever in, physically verbally, emotionally abused... family friends teachers employers doctors... it was rough decades ago! And Christina, I have had your same neck brace for a year, and hate the irritation too. My liner has come apart from the rubber twice now, and am having it re-ordered again. I like your silk scarf liner, but am curious about the pink thing you had tied around it? I would love if you could come up with a solution we can use too somehow come up with a more absorbent liner that we can easily take out and wash... that is natural fibers, and breathable... it gets SO hot and sweaty! My chiari is not operative, so my collar is for life... would love to find a way to make it stand up to time better and you are so handy at that stuff! :)

@melmelbug

6 жыл бұрын

OMG Christina that is totally priceless... LOL! I don't know if it's the fact that it's panties, or the fact you actually shared that with me... LOL! Omg that is too funny! You gave me a good laugh, and I think I will give that a try! :D Yes, I have found the linking lasts about 6 months! My leg braces seem to last a couple months? :( Well, I have an appt. set for that. It is nice to have a reply from you, thank you! :) I may share a picture of what I come up with, but not sure I would want everybody to know they are panties! :D haha thanks again for the laugh!

How old is your sister?

@christinadoherty3212

6 жыл бұрын

+Jessica B Shes 18

@lauren3596

6 жыл бұрын

Finally someone acknowledges me😂🙌🏻

@533134

6 жыл бұрын

Lauren Doherty I always seen you on the videos and I figured I would ask :)

@christinadoherty3212

6 жыл бұрын

+Lauren Doherty ❤️😂

I think recently there have also been some contractual changes regarding meds and also there’s currently a saline shortage.

@christinadoherty3212

6 жыл бұрын

+ybarrett Its crazy! Every time I pick up my meds there seems to be a new protocol lol. I hope they can figure everything out soon. Im sure its very frustrating for the professionals involved as well!

@ybarrett

6 жыл бұрын

I’m sure you may have tried this but check to see if your local hospital or clinics have a med assist program, that way you can get what you need for free. I don’t know the time constraints on the program but they have one where I work.