Vlogging with EDS: A Week of Rants | Week 90 

“Rant” sounds so negative , how about “Vent” ? We all need great ventilation 😝 ! Sunflower Trivet , great idea !

No apologizes necessary Christina. You’ve been through so much in the past month and your body just needs to rest. Sending you love, hugs and healing blessings. ✨💖✨💫

Three videos in a week, woho! No I am not tired of hearing your voice. I was not bored from watching you talk at all. I really wish I had a Trish too. Wishing Lauren a speedy recovery. Much love ❤❤❤ Oh, and the sunflower blanket looks awesome!

Your hair is so beautiful (I mean, the rest of you too is, of course...)! Your blanket is too, and what a fantastic gift! You are allowed to have a cruddy day. Don't let those thoughts and feelings live in your head forever. It's better to let them out so new, happy ones can come in =)! I really like the stone idea. The sunflowers are so pretty, and I can't blame you for wanting to put them everywhere, but I have a sunflower tattoo, so I may be biased. You still manage plenty of smiles and to be positive a lot of the time, even in this "rant" video, so please don't be hard on yourself!

Even though you may be complaining about your day to day struggles I enjoy watching it because you do everything with a smile. Your smile brightened my day even though it wasn't your intention for this video. ❤❤❤

I have a real hard time resting too. My asthma is really bad right now and I find it hard to just sit down and not think of all the things I should be doing. Thanks for the reminder!

It’s no wonder you are so tired sweetheart I’m glad you are listening and resting xx

You’re not an obnoxious burden. You are valid ❤️

Ooohh sweetie... we all have days, or weeks, sometimes months like this. Heck! We even have the occasional year full of ranting and venting. It's ok. Better to let it out then keep it bottled up where it'll do more harm to you. 💜🦓

Trish sounds like a very sensible lady. You take her advice, sweetie, and you’ll be able to start climbing back to baseline before too long xxxxxxxxxxx

No apologies necessary Christina! I enjoy your videos

Thanks for the rest reminder. I always know I need to rest but it's good to hear it from elsewhere! 😊

p.s LOVING your weird spoonie products review. - There's actually so many out there and I never know whats good or not! You're the best. and I'm sad I'm so behind in your weeks!

Blessing in disguise that you didn’t end up going to the beach and possibly catching strep. Hope your sis feels better soon! Xx

Thank you so much for the link to the crochet pattern! Your blanket is gorgeous, I actually received one of the squares in my crochet swap all the way from Australia! I love it, but I'm going to try it not as a sunflower, but a gerbera Daisy type flower, not sure how it will look, but I'm going to try! I hope you feel better soon, and don't forget to rest!!!

Your Afghan is beautiful. You did an amazing job!

Hope u managed to get some rest and that ur sister is doing better. When u spoke about the to hep or not to hep regarding ur port. I'm a nursing sister (UK) and I put port's in, removed them, trouble shooted as needed. Some research regarding the ports say that I don't need to heplock them. We always did but even in the UK I do believe some hospitals don't, unless patient has known clotting issues. Sending love and hugs from Scotland xxxx

Rants happen. Just glad to see you out of the hospital. 😊

Totally agree with you about a tablet coaster and placemat set made of sunflowers!!!

I love the depth in this one

I believe you're thinking of a "trivet" for hot dishes.

Please rest. You need it and we need you to have it. Peace.

The blanket is beautiful! You always motivate me to crochet more

Yeah I’m like deadly allergic to heparin. I coded when it was given to me. The hospital I use gives it to everyone with a week or longer hospital stay.

Christina, you literally help me keep my chin up. Thanks so much for spreading the love and positivity!!! You are a beautiful mess. ❤️

I have weeks like that too, glad to know I’m not the only one! Resting takes a lot of mental effort for something that by definition is supposed to be relaxing

I just love you! You always bring a smile to my face. :) On the days I’m not doing so good, I just watch you and think positive. Your an amazing person...Thank you, your such an inspiration. Xo P.S. The yellow flowers though...LOVE THEM! You did a fantastic job!

I am really excited to see the review of the mat, I have Fibromyalgia and get alot of muscle spasms and knots and want one, but am so iffy on it

Thanks for the reminder to take care of ourselves. I ended up in the ER with anaphylaxis yesterday and am grounded to my room. I reacted to Dawn. This morning I went in the kitchen and touched the faucet handle and immediately started itching. So now I'm grounded until they can get every trace of it out of the kitchen. I hope your sister's antibiotic works. Caro is just getting over strep as well. Her first antibiotic was a bust- it caused major migraines- but she has done well with the Z-pack. You stay safe! Maybe it would help if you used some of the blue Nitrile gloves when you have to go into other rooms, that way you don't touch a door knob or anything that has her cooties on it. ;-)

You're entitled to rant Sweetie, it makes you human 💖✌

I am definitely interested in the bed of nails! I’m curious to know what conditions you find it helpful for, pain, anxiety, etc. Also, if you don’t mind sharing, what are all of your night meds? PS: the sunflower blanket is beautiful!!

that afghan is adorable!

oh no! not strep! I hope the quarantine works, its no fun dealing with that on top of everything.

We're here for you no matter what. Please let yourself rest.

Hey love! Your viewers are the last people you need to apologize to, we understand what life can be like!!! I was just referred to a specialist to test for EDS, so there may be something connecting all my random diagnoses, we will see. Take care of yourself ♥️

Do you use a CADD pump and duracell batteries? If so, the professional batteries have a reputation for being dead on arrival. They have made changes so it's not as bad as it used to be, but it still does happen from time to time. Often times with chronic illness, we're so used to not being able to do what we want to, that we try to cram too much on good days because you don't know when you're going to feel good again. Unfortunately, this often backfires and we end up not feeling well again. I love your sunflower blanket it is absolutely wonderful! A square about the size of four of your sunflower is the perfect size to donate to shelters for blankets for the animals or to donate to NICU units at the hospital. Heparin is actually a mast cell mediator. In the hospital setting, there are A few different strengths of heparin. You have the one used to flush your line and there is a more concentrated heparin they use for clotting issues. Errors made by using the concentrated heparin to flush the line are often times fatal. This is why most hospitals no longer use heparin flushes. You can always bring your flushes from home and administer it yourself. You just need to let your doctor know you have it and will be using it. If your line is still sluggish in a couple of days, call your doctor and let them know you need to set up an appointment to get TPA. They will put it in your line for about a half an hour and then they take it out. It usually works just fine after that. Even though you may think this blog is boring, it is a perfect love to show that sometimes we just don't have interesting weeks. Casting of the stones is a great idea. If the stone washes up on the beach at some point and somebody else picks it up, does that mean they will be taking on the burdens that you threw away? Lol! Have a good week! I look forward to seeing you again next week.

Trish is right! Rest and recuperation is what you need - you have been trough 5 major surgeries in very short order and to jump back into PT too quickly may do more damage than good. And then it will be an endless cycle of hurt help hurt help.... Been there done that.... Sooo sorry your sister has strep - icky stuff - I sure hope she is able to get it out of her system sooner than anticipated! Lol it's not like getting it is done on purpose and it's got to be miserable for her. I'm sure she feels bad and feels bad that it's a potential game changer for you. Hope you get well soon sister! I'm so glad you got to stop in and see your grandparents! What a treat! Quick question - is your grandfather on any protocol for his Lyme ? If he is not or is looking into one...?... Then one of my best friends is familiar with a homeopathic one that has had awesomely great results for her family! It's called the DesBio treatment. If you think it may be useful I can get more info from her, or you could contact her (I'm pretty sure you two are "friends" on Facebook) My sweet friend and sister has been a wealth of resources to me - helping to get me to and pointing me in the right direction with a great deal of medical things. She has been there and done that for herself and entire family. The struggle is alive and real for all of us and it is ho helpful to have a team of people to help! As always - Thank you for another week of video - they are always good and encouraging - lol a week does not need to be exciting and have many things in it to be a good week worth of video. It was great! Great big EDS hugs to you my sweet friend!

I think you have a very calming voice, so keep the videos coming. :)

I would be so stressed out without heparin locks! glad it didn’t clot on you!!

I couldn’t use the bed of nails , my nervous system is just way to hyper sensitive . I ended up itching like crazy from it , so sad .

My hospital never hep locks any sort of central lines unless they deaccess a port. When I had PICC lines I never once used heparin and now only when I get my port deaccessed do I use heparin.

Wow, they gave me heparin in the stomach and I didn't have a line or anything. I didn't even have surgery the first time, just the flu...I'm an asmatic and it went kind of crazy.

Sometime bad weeks happen it's ok no need to apologise

Everyone needs to rant!

You should put some in your bigger pots to remind you, its okay to feel that way, its the journey to recovery and illnesses.

Good Lord be wary of that bc my picc line wasnt flushed w heparin once and a nurse couldnt get it to go. She then called the head nurse who pushed w all her might and we later found out she had pushed a clot through my veins and it ended up in my lung as an embolism. My Crohns flare for which iwas hospitalized turned into a pretty scary experience and 8 weeks of more picc antibiotics.

That was a sick thumbnail 😊

this was a great video!!! also where did you get your black wrap/ scraf thing?? its super cute

We call them hot pads.

I’m an edser that’s allergic to sunflower products. The seeds and oil, etc.

honest im the same with people when they have viruses/colds. I'm sorry for them, because I know it sucks, but dear God please don't give it to my me, my body is already everywhere! - my sister coughed on my food the other day. I was not nice about it..... :?

❤

Hey beautiful I thought it was a great vlog you look fantastic. I am sorry your sister got sick strep is one of the worst sicknesses you can get I hope you are feeling better! On the 18th I had my fibula and tibia operated on because I am pretty sure a car cut me off and I hit the car breaking my ankle and 2 ribs.... When I woke up from surgery I had a massive panic attack a nurse and the anesthesiologist stayed with me till they saw I was better then took me back to my room it took 2.5 hours to recover my mom was pretty worried. The surgeon didn't even come to tell me what all he did and what not I just got sent home when I could. I can't bare weight on my leg at all so I have to crawl upstairs and I am destroying my right knee from it I am sadly going to have a nice scar when it heals. I have an appointment in a week I think to see when I can walk again. I can't wait to get back to work and be able to walk it is so frustrating. I am excited about the pressure mat review and I will never get tired of hearing your voice. 💜 Love you and Lauren ooodles and ooodles!

I have never heard of not using heparin flushes with a port......

Hey christina

Your so beautiful ❤💋🙏 strong inspired

Have you thought of using IVIG to boost your immune system and help your mast cell?

Can you take preventative antibiotics? Hugs xxx

Wat was ur experience if u had ur wisdom teeth removed? Im nervoua and stuff

This is an incredibly dumb question and I’m so sorry if it’s rude. I definitely don’t intend it to be ignorant. However, do you feel hungry? I know you had a problem with swallowing. Also, you say “I’m gonna drink some water.” You’re able to swallow the water? Once again, I mean no offense! I absolutely adore you’re videos and you’ve opened my eyes tremendously!

First!

I know it's not a big deal compared to the major pollution that occurs every day, but could that particular ink or paint be toxic for small creatures that live in the water near the area where you might place those stones?

I would like to see more videos that include your family, like maybe you and your sister interacting. (Well once she is better). Seems like it would be good for you to not focus so much on your illnesses and put more focus on just living life the best way you can. It would be super inspiring to see video footage of you doing normal life things sometimes, once you have healed from surgery.