Vlogging with EDS: Brain Fluid Everywhere and The Adventures of Bonnie and Christina | Week 95 

Hey Christina! This has also been the hardest week of my life and seeing you do what you gotta do is so inspiring. I have EDS and have dealt with many a rough day, but this week has been more than I've ever imagined a person could handle. I will let you know though that if I could take away your pain and have the rest of my days as bad as these, I would do it. You are a person that I wish I could hug in real life. I admire your spirit and have you in my thoughts and prayers. Someone once told me that God never gives us more than we can handle. I disagree. I think God gives us way more than we can handle, so we can turn to His strength and love to get through it. Sending you gentle hugs and healing vibes

I am 43 and undiagnosed. My heart goes out to u and your mother. Sending you healing vibes and love. Blessings to you both 💕

I feel like everyone I know that is a Spoonie is an awesome DIY person as well. I make soap and whipped body butter just so I know what's in it... I'd love to learn Bonnies secret to lip balm because I know nothing there. I keep getting blisters on my lips from store brands. I Crochet too as well as paint and I have metal stamps I haven't really used yet. I feel like we all cope with DIY things to just have something to do, but also to save us from out issues, like with the DIY soap, lotions and the likes.

Christina I’m sending you and your family so much love.

You are a Warrior Christina! Stay safe and rest for now. Sending you love and prayers from Ohio.

What a wonderful friend! Can I barrow her???? She is such a talented and crafty lady!!❤️

I'm so glad Bonnie could be there!!! And the embroidery projects are so pretty! Lol you with the breathing machine and Bonnie with her vest! So glad you gals could chill together at least for a little while, so good to have someone who knows you and have them visit in person! So sorry sweet lady that you are having such a hard time with this shunt leaking stuff... I continue to keep praying for you and your entire family. Your poor sister... So thankful that you mom could take you and your dad could truly be available and help your sister. Thank you so much for keeping this real- people need to be aware of all of this and know that it can be really rough. Awe so sorry... Thankful there are people who can help to troubleshoot what is going on and skilled people can help! As always always a great video! gentle hugs my friend!

Christina, I so hope they take care of that spinal fluid leak asap so you can start feeling better. Your mom wins mom of the year award in my book. Hope everything goes well. I would love Bonnie's lip balm recipe and to know where she gets the tubes and containers she put it in. Good lip balms hard to find.

I’ve been there, literally. I had an LP shunt (and a VP one but that didn’t last long) placed and dealt a CSF leak for awhile. I can remember one specific time when I was standing in the kitchen doing the dishes and my husband came up behind me and asked why the back of my shirt was wet... uhhh I don’t know? And then oh no, it’s coming from my incision... and then oh no, this fluid is totally clear, this is CSF... and then ohhhh no, my doctor is 7 hours away and it’s 7pm. That was a fun drive. I had it happen one other time but luckily I had switched to a closer neurosurgeon by that point. I know exactly what you mean about them taking you seriously and moving fast if you show up in the ER and your answer to “so what brings you in today?” is “well, I seem to leaking CSF from my back/abdomen”. Both times I was taken right back and hooked up to IV antibiotics faster than I’ve ever had anything happen in the hospital. And actually typing this I’m remembering a third time, unrelated to any shunt as I don’t have one anymore, that happened like 2 1/2 years ago. I had surgery for a tethered spinal cord in Pittsburgh, was processed for discharge and even though I knew I had a leak and it was obvious, the PA discharging me still sent me home (with the words “yeah it could be a CSF leak but we’ll know for sure when you come back for your post-op appointment in 2 1/2 weeks” - I was like okay so we’ll know because it will still be leaking or because I’ll have contracted meningitis - which happened with one previous leak because like you said, if stuff can get out, stuff can get in - and won’t be making that appointment?), which was 6 hours away. I ended up having a second surgery the day after I got home by the same neurosurgeon who had treated my previous leak, and I remember him joking around and wondering how many times he was going to have to fix leaks caused by other neurosurgeons. He’s like my plumber neurosurgeon, if you will. Anyway, all that to say I know how you feel. The headache from sitting up that only gets worse the longer you’re upright, feeling like your eyes and brain stem are being pulled down, soaking through every bandage or gauze they give you so fast that they eventually just bring you a small stock of them to keep in your room. The headache is the worst part in my opinion, and I have a longggg history of dealing with it as I did have an active leak due to a dural tear that wasn’t resolved for around 6 years (I spent most of that time figuring out ways to live my life while sitting or standing as little as possible. Looking back, I have no idea how I did it for so long - guess it’s one of those “do what you have to do” situations). I hope that things get better for you ASAP and that you can get this fixed. I haven’t checked your Instagram since you posted this video, so I’m going to do that and my fingers are crossed for good news.

So happy that you got to spend time with Bonnie. Thank god you made it to the hospital and you are in the best place for whatever happens. I will keep you in my thoughts and prayers..

My heart goes out to you. We have the same base syndrome but suffering in different ways. You're in my thoughts and prayers, always. Godspeed

I’m praying for you Christina!!!! 🙏❤️

Hugs to you! Have you considered relocating until the shunt is working well and healed up? I know it's not ideal, but I'm very concerned about you not being able to get to the hospital there in time if you get a blood or spinal infection. A few years ago, I developed a severe infection in my blood and back from a spinal tap. Within 8 hrs of deciding to go to the er, I wound up in icu clinging to life. I did the well maybe I'll go in later, or tomorrow, or let's wait and see. They thought I was unconscious. I couldn't move, talk, or respond. The took my hearing aids out so I couldn't hear either. But, I could feel everything, was in excruciating pain, and had absolutely no way to let anyone know. Hopefully your surgeon will get you back on track! They may need to put an external drain in until they get the shunt adjusted right and you heal up. It sucks big time to have drains hanging out,but it's the only way we got my abdomen to heal after surgery and it took like 2 months. It looked just like yours. Adequate nutrition is imperative to healing! If feeds are not going real well or they need you npo, you may want to have them put you on tpn while you at in the hospital. It has been proven to decrease complications and speed up healing times after surgery. Hang in there! I'm sending healing thoughts and prayers.

Christina, we love you. So. Very. Much. You and your family will forever have our love and support. 🖤

Yesss Harry Potter!!! I’m so glad through your journey you have a good time with Bonnie visiting!

Oh, wow! Christina! HUGE prayers going up for you. You are amazing! When I saw the spot on your shirt when you were in the car and you were so sick I was literally screaming at my computer "GET A GURNEY"!!! I, for one, CANNOT believe your Neurosurgeon knows that you are leaking spinal fluid and did NOT come in and assess you! Maybe it's not as big of a deal as I think it is, but it seems pretty import to me! On the good side, Bonnie is AMAZING! I loved her corn on the cob trick and I'm going to try it!!!

Sending you lots of love xxxx

I'm not happy to hear about the shunt draining but I am saying a prayer for you. You are so cute together and you're right, Bonnie is the best type of friend!!! You two are lucky to have found each other💖✌

Please be well darling. You’ve been in my prayers all day xxxx.

Sending love and strength your way xxx

I hope you get feeling better ❤️

Sending love and hugs. Hope you get better.

Sending you hugs from Ireland for a speedy recovery !You are one amazing young woman to have the strength of character you do going through all you have to go through with your condition! Your an inspiration !

Praying for you Christina , your so brave ❤️ to you !

I'm praying for you, girl.❤️

So glad you’re spending time with your friend! Prayers 🙏🏻🙏🏻🙏🏻

Hey Christina praying for you🙏🏾❤️

Awwww hunnie sending preys and healing out for u. I hope they con sort out what's going on and start helping u to feel much better. It's starts to work and then yr back again. U r such a worrior and yr family are amazing. Yr care is so amazing. If u was to come here to the UK I don't think u would have a quarter of the things sorted it doctors who know how to treat u. This is a big deal for me right now with many things. Sedning healing so hugs. Keep fighting zebra worrior. 🦓💪💚 xxx

You are in my thoughts hunni sending you big hugs xx

My friends son has Chiari malformation, he also had the Chiari decompression surgery last year he was 6 yes old. Strong strong 💛

Sending love to all of your family too - this must be so tough all round xxxxxxxxxxxxx

Hope you feel better soon Christina!

Hugs! So sorry. You are so sweet. Thinking happy thoughts for quick healing!

I'm so so sorry you are having to go through all of this. Sending love and prayers to you and your family. Xxxxxx

Hang in there! I love following your journey. You're the highlight of my mondays! 💜

The bag you embroidered is very cute! I wish you all the best.

Christina, with all the courage you've taught us, I hope we can give you a little bit back. In Dutch they say Sterkte en beterschap! It means courage and get well soon. Love you!

I'm so sorry Christina! Sending you prayers and good thoughts to you and your family in this rough rough time.

your dog is so precious!!

Prayers for you from California.

Prayers on the way.

Sending prayers and speedy healing wishes Christina. You are a true warrior. Love your embroidery. So cute! Keep up the fight and do what you gotta do ❤

Yep about the ER quick moving over spinal fluid. When I had a spinal headache due to a leak following a lumbar puncture, they rushed me in with half my paperwork done.

I hope everything goes well!! so sorry youre dealing with this, best wishes! 💚💚

I feel so sorry about you. I hope you get better soon. Sending my heart to you. 🙏

I'm praying hard for you and your family! And for Sammy, because dogs just knowwww when things are going wrong. I'm fairly certain at this point that my yorkie feels everything I feel lol. But really. I'm so so happy you have such good friends and a supportive family. It's unbelievably difficult to handle everything with sick kids but the strength you guys have is unbreakable

Wow the end of this vlog week was like the cliffhanger at the end of a season of a tv show!! So many prayers to you sweetheart hope they can find a way to make this work for you xxxx

I have just found your channel beautiful vlog made by two beautiful people I hope things will get better for you soon christina love you

Sweet Christina , your family here on RU-vid is praying for you . We send our love and hugs to you and your family !!!!!!!!!!!!!!!!

Hope ur okay. Been waiting to see ur next video !

Was so worried from your Instagram stories! Very gentle hugs to you. Keeping you and your family in my thoughts.

Awww no ,,so sorry your poorly Christina,blimmy you do go through it bless you, hopefully your in a safe place and they get you sorted ,o and your inbroadary is brilliant,you pick thinks up so easily,àny way you make sure you rest ,and we will wait and hopefully next vlog will bring some good news sending lots of gentle hugs x

So so sorry this has happened praying for You that everything gets fixed You're amazing how You're handling all of this God Bless You

Oh no you poor dear soul. I am sending you all of my love and compassion. On another note it's so wild seeing you come to the ER that I also have to go to all of the time. Hershey can be such a gamble, but I'm so glad they took you seriously and understood what was going on. They've not always been helpful for me, but miles away from other hospitals and I'm so relieved that you trust them and have had some positive experiences. I am so worried about you. I'm sending you my entire heart. If you're ever up for visitors or need things -- feel free to reach out. My mom and I would happily help!

Hugs beautiful ❤ what a blimmin difficult time for you :-( You are totally in my thoughts. Hoping for a miracle....xxxxx

Omg. That embroidered elephant was beautiful! You should upload a video of Bonnie doing an embroidery tutorial.

Prayers

God bless your heart Christina!! He's got you hun, hang in there!! So many hugs I send you, and pray this gets completely under control. In my heart and on my mind always..your so loved Christina xo

Hi Christina, I enjoyed seeing Bonnie on your Vlog, she seems like a great friend and I’m glad she was able to spend time with you and teach you the art of crocheting. I have to admit it was difficult to watch the last half of the video. I’m an empath and I really feel for what you are going through with your spinal fluid leak. I’m praying they find a solution to this issue and that you can begin to heal from all the trauma of the last few surgeries. Much love and healing blessings. ✨💖✨🙏🏼✨🙌🏼✨✨💖✨💫

I just subscribed today. I found you through a comment on The Fry Life channel. I am praying that they fix this issue for you and you get better soon. I am looking forward to watching old videos and learning about your story and following to watch you succeed. Be blessed an know God is in charge✨💕

Hugs Christina! you are so brave, need you to get better (I want a Sunflower blanket, LOL) ......love.....

Oh my days that's all you need hope it can be repaired take it easy xx

Praying for you.

you’re so inspiring 💕 good luck with everything, i’m a lil worried!

Hang in there. You are in my prayers.

You actually ended a vlog on a cliffhanger. I didn't know that was possible. Really sorry your shunt is malfunctioning though! I hope you and your surgeon can get it resolved soon.

Praying for you! I am so glad Bonnie got to come stay with you. That is awesome when you have someone who really understands lots of what you go through and who can help you feel more normal and comfortable. Any spinal fluid leaking isn't good but I am praying they have gone in and done something to stop the leak by now. Definitely checking your Insta shortly! I love Kingsman as well I haven't seen the 2nd yet but I hear it's good. (=I don't know how you made it to PA but I am glad they got you straight back and am praying for you recovery. I am sad you have to keep doing this. But you're right. You do what you gotta do. And if your doc knows EDS then that is even better!!

Hi Christina, I'm so very sorry about all the Shunt problems! I hope your ok and I'm wondering if you had another shunt put in? I'm two wks out from mine. I had no complications and I'm doing good. I'm getting mine adjusted soon. I hope your surgeon gets it right and your journey to healing starts soon. We sure have it rough with IIH and EDS and everything else that is given to you. Hugs and many prayers🙏💙🙏

You have gone through a lot my prayers are with you

yours is life threatening its not your fault or can be helped its hard being a sibling i know hope they can make you feel ok and fix the problem again you are so strong and amazing sending prayers and hugs from uk xxx

Matching elephant pajamas? Your friend Bonnie is a keeper! I follow you on IG and have been worried after seeing your instastories - just saw you are in surgery now. Girrrrl you are a true badass! 👊 praying for you ❤️

that's awsome lauren is a Harry potter fan !!! so cute

Really hoping that you get the surgery you need ASAP ❤️

I hope to meet u sometime christina.wishing u recovery

My heart breaks for you as you endure this. You amaze me with your courage, but you just don't deserve this. I'm glad you got to have a nice week with Bonnie at least, and now I want to be friends with Bonnie too!

We do the corn in the micro but no paper towel and once it comes out you cut the bottom and then from the top squeeze and it comes out perfect. Praying for you saw your insta.

Prayers always. And your such a bad!@$ warrior!!!!!!!! Such an INSPIRATION u and your family!!!!

🙏🏾

Hey, Christina, I was updating my sister, Ashley, about you, and she said she’s friends with Bonnie! Teeny EDS world, right? We are praying for you and rooting for you down here in the Nashville, TN area. No need to reply anytime soon. Am wishing you good rest when you can get it, good feeds whenever possible, good pain control, and especially a solution for the leak. Wishing rest for your mom too. Much love from another 🦓 family!! ~ Andrea H.

❤️ 🙏 ❤️

I thought you could be around food, Christina??!? Praying that the spinal fluid leaks get fixed!!

Hi Christina, I just had to send this message, I’ve been so worried about you!! My friend has you on her Instagram, and unfortunately I don’t have it. She keeps me up to date as often as possible as to how your doing. Christina, I pray for you all the time, and pray you won’t have these complications again..Bless your heart xoxo Anyway, I hope to hear from your soon and know that your so loved!! Bonnie, I will keep you in my prayers as well!! I love ya Christina I will also keep your family In my prayers! xo

Sending so much love Christina

Im so sorry!! :( praying so much for you!!! 💜💜🙏🙏 *i have a worship & praise playlist for esp when my pain gets so bad or everything seems to be getting worse and these are a few of my favs. I hope they help bring u some peace, comfort, n strength!! 💜 if u want more lmk!! * "you are"by life church! Brand new song they wrote for the pastors daughter who is chronically ill! *reckless love by Cory Asbury *miracle or not by alisa turner *strong God by desperation band(one of my fav bands!!) *elevation worship(do it again- fav right now !) N verticle church band(set my heart- my fav!) have a ton great ones too! 💜

Hey! I have EDS and also recently saw doc Frasier and was told I need a cervical fusion c1-4 I’m terrified and what more opinions, because I’ve had so many other surgeries already and quite frankly don’t want another one since the benefits sometimes to beat the bad side. I saw you used the same doctor and would love to hear if you think it was worth it and the whole experience. I’m in pain everyday and have neurological symptoms but I’m just terrified of neck surgery. Thanks if you can get back to me! And stay strong 🤘

Your crochet-harry potter day sounded like a perfect day to me!🤗 Bonnie seems great! Loving the matching elephant leggings! It goes without saying, but your mom is spectacular. I sure could use Trish. Have yet to find a pt that's helpful with all the EDS crap. Leaking spinal fluid sounds scary as hell. I'm super interested in Bonnie's lung issues and vest, because I'm going through the same conversations with my allergist and EDS docs. They have no idea why I'm having such congestion...so far it's being chocked up to mast cell junk. Does Bonnie have MCAS as well? I watch the Frey Life and as I've been battling this congestion, I was thinking, I'm acting like Mary does when she coughs and could sure use her vest. I'm sorry you're having so much trouble and you have to go so far for help/relief. Sorry to hear about your family troubles. When it rains it pours. Hang in there sweetie. Lots of prayers for you and family. I'm adding Bonnie to my prayers as well. 💖💗

Oh you poor thing! I feel for you...

Well this news just sucks Christina!! I hope the neurosurgeon comes in with a great plan tomorrow!! Here's to also hoping your visit there is a short one and you're feeling better very soon!!

Love you big time. How can I get some of Bonnie’s lip balm? I’m a “lip stuff” freak.

My husband adjusts my ribs almost every day to help me breathe. I have ashthma and it helps me stand up taller and breathe easier. Ribs play a huge role in breathing that I wasn't really aware of until he start working on me.

I no how u feel I live with headaches because my hydrocephalus mild form of spine bifida I love ur videos I am from Glasgow in Scotland xx

oh, gosh . Prayers for you, precious gurl. This whole draining of spinal fluid sounds a little too experimental. If it had the intended effect, it would be soo awesome. I have all the same symptoms, and the hearing and vision problems and headaches suck. But what you are going through is a nightmare. When I saw you lying in the hospital bed talking about being NPO, I thought: I would be terrified, laying there knowing my brain fluid is leaking out of me and the bleepin drs can't seem to get it right, and they think that not giving me any nutrition is best for now. lol. Glad they let you do the feeds! Praying for you, Christina, that you will be healed, and that the drs and nurses make the wisest decisions for you, and that they care for you thoughtfully and responsibly and respectfully. 💟💕💞💕❣💗🙏🙏🙏🙏🙏🙏🙏 Oh, yeah, p.s. really loved your embroidery project! And the lip balm looked awesome. I love arts and crafts, so I enjoy watching you do it, too. Bonnie is a great friend. So glad you have her. And then there's your mom.... you are very blessed. Get well, soon. 🙏🙏🙏🙏🙏

I would love to know where to buy Bonnie’s handmade lip balm?

I just lost my best friend from Cystic Fibrosis 3 months ago. I'm glad your friend doesn't have it. It's horrible.

Bru i just got brai. Fluid from csf on my pillow this a.m ughhh. "Do what u gotta do" truth

Damn that old chestnut- the unfamiliar microwave! Xxxx

I love embroidery! Any chance Bonnie would share her lip balm recipe?

If the lip balms are so amazing is there a place we can buy them 😜

#BonnieBalm

oh jeez!