Vlogging with EDS: I Overdosed on Xolair | Week 58
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- Опубликовано: 17 дек 2017
- Wishing everybody a wonderful week and extra spoons for this coming weeks! Sorry I have had to film on my phone this week. I should have my camera back soon. This weeks Vlogger shoutout goes to Liz. Liz has been going through a rough time recently with serious symptom flares but with no answers as to why. I feel like that is something that a lot of us can relate to. I like how open and honest about what she's going through and how she feels about it. So go show her some love! / @lizmastro4458
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I always wondered why your christmas traditions (St Nikolaus and so on) were so similiar to mine. Considering I live in Austria and never saw an US American celebrating this way. Then I head your mom singing in German. Frohe Weihnachten! :)
Let's be real. Lauren's "five golden rings" part of the song really stole the show 😜💜 hope you and your family have a lovely Christmas!
+Marisa Visser Shes going to hold this comment over my head forever! 😂 Ill have to send it to her. It will definitely make her smile lol
MY FANS😻😂
Hahaha 💜
I had NO IDEA that there was a succulent subscription box! That is so cool! I hope that your knee doe ok this week and that you find a more comfortable position in the car that works for you.
im binging all your videos, your really nice to listen to as i go about my day/night
Hey Christina. It was really interesting to hear about the sensory processing disorder. My daughter has this and she is autistic (aspergers syndrome) and mildly hypermobile. I have the same hearing difficulties as you are experiencing and I have hypermobility syndrome and fibromyalgia. I was told that the sensory processing was related to the fibromyalgia. A common complaint being hypersensitivity and hypervigilance to sound, smell, Light etc. There definitely seems to be a link between EDS/ASD/FIBRO /ADHD in relation to cognitive impairments and sensory overload be it pain or sound. I wait with interest as to where you go from here and really hope you benefit x
I always started with day one of the advent calendar and ended with day 24 (we celebrate Christmas on Christmas eve in Sweden). Some of the calendars are coupled to Christmas TV-shows and doesn't contain any candy. I've never seen a 12-day calendar. It's great that there are options without candy that you can still enjoy!
sit on the back left side so you right knee is more straight onto the center console, will help you not to twist your back/pelvis. You will be much more straight with just your leg up
I love succulents!❤️❤️ your new ones are sooooo cute!
I was just reading my Neuro Psych test evaluation last evening . It was a draining 2 day test, 8 hours a day. Learned a lot about my brain's high and low function areas.
The other thing you said that I loved was the relationship in the chest cavity between pain, and the lack of expansion that causes so much of my shortness of breath. My asthma i can take meds for. But the pain and inflammation between my ribs. As well as the area in side between my lungs and ribs that gets so inflamed.
Inflamation breathing is very shallow because of pain. Anytime i need to exert myself i end up gasping for air.
The Advent box i always counted down. First day of month to Christmas.
Thank you Merry Christmas Bill
Hi Christina! I was diagnosed with an Auditory Processing Disorder when I was 8 and was given Auditory Integration Training. It's definitely a more experimental treatment, but it worked for me! Because I was 8, I didn't realize the benefits the treatment gave me at the time, but my parents really saw me start thriving after I finished treatment. I'm technically not allowed to play music through headphones because the Auditory Integration Training used headphones to play music that used specific audio waves to train my brain better, I guess? Sometimes I'll recognize old songs on the radio that were used from the sessions lol I started using headphones 4 years ago, and I'd really be interested to see if my scores are any lower than my post training test scores... I haven't really noticed any huge differences in the past 4 years, but I definitely still have APD moments. Just sharing my experience! Love your vlogs!
You seriously are the cutest. Subscribing to a succulent box
That succulent box looks awesome!! I'm glad this week was a good one for you, and that you might have found a good way to reintegrate the Zolair. It probably wouldn't have occurred to me either to ask about the dosages, so don't feel too silly about that. Merry Christmas!! Love and Spoons
This is my favorite video you've made so far!
Yesssss! Crazy plant Lady! Fist bump as we do it with silver ring splint laden fingers! This entire video rang home to me, I completely get the auditory processing issues, the meds doing crazy things and not consistent, PT this entire video was spot on and as usual encouraging!
THAT's how you say it! *ketotifan* I don't even know if I spelled it right. I hate when I can't pronounce medical words. Lol. So happy you got in to see the Dr and it was a good appt. I learn so much from your vlogs. Thanks and Merry Christmas to you and your family!
I am glad you are feeling more like yourself again :). Something like the Milliard leg elevation pillow really helped me sleeping with the brace on, without being super uncomfy. And when sleeping on your back with your legs straight down, that usually brings tension to the inner thigh muscles and elevating the legs can really help that.
I need to check out my Dosage next month now. I just thought they did it for you and went off last weight on your charts. That's just crazy and wrong. Maybe that's why I was in the ER for 2 nights! I just got home this morning. That is crazy, thank you for sharing that info I would never think to ask.
I was so looking forward to this video today and as usual you didn’t disappoint ♥️ I’m having such a hard time with my pain this week since my doctor switched my pain medication and I’m miserable and barely getting any sleep and not keeping any food or water (I’ve been taking my meds with sips of juice) so I’m running my Iv fluids 24/7 and trying to stay out of the hospital. My knee does exactly what yours did in the brace!!!! And yes, your way is definitely the right way to do the advent calendar for sure. I can’t believe other people do it backwards!!! Anyways, thanks again for organizing the secret Santa! I literally just emailed you about my secret Santa 😂😂😂
Yay a new video!! I love your vlogs
Currently watching with a random nosebleed lol
Took me some time to realize your mom was singing in German :D
Christmas greetings from Germany!
DarkButterfliy and from Switzerland :) only realized it after your comment :D
I’m from Germany too and I noticed the shoes with the goodies in them in your last vlog! That’s a german tradition for 6. of December :)
Frohliche Weinachten von Arizona! 🎄 (hope that was right😉)
Almost, it's spelled Fröhliche Weihnachten :) but of course thank you!
DarkButterfliy ...so close! I don't have the umlauts on my keyboard. Lol we always got an orange in our shoe🤗
Don’t kick yourself too much about not knowing about your dosage options. Yes, it’s *part* of your job to ask questions about things like that to keep yourself healthy but it’s *entirely* the doctors’ job to tell you all of your options. Sometimes stuff slips unfortunately. Glad you have more hope about the situation after that appointment though! Also I feel you so much on the stubborn factor; I make a lot of ill advised medical decisions bc of stubbornness.
Ahhh, Sweeney Todd, the creepy factor is here at Christmas time too! :) That art on your wall is stunning!
Have a good rest of your week, and Merry Christmas to you and your family!
Omg Supernatural’s an awesome show!
As a Gernan I would say your mothers German sounded pretty good! I could totally understand the words :-) I wish you all a Merry Christmas!
I focused in on your Cabaret poster. I love Cabaret! So excited to be going to see it at our local theatre in April.
+Lois Cassels You are the first ever person to comment on that! I have finally found a fellow Cabaret fan! I love all musicals, but I have a huge soft spot for Liza and Joel! I hope you enjoy the show! Wish I was coming with!
1. I'm 19 & haven't worn matching socks since i was maybe 6.
2. In middle school my friends and & shared shoes, so like one of my friends had green converse & i had blue ones, so we each traded one & wore a blue & green shoe, and another friend and i did the same with flip flops
3. I've seen the Sweeney Todd movie (no exaggeration) at LEAST 100 times & i always make everyone watch it if they haven't seen it
OMG, I thought I was the only one IN THE WORLD who looooves socks! I alwals wish socks for christmas, but everyone else think it is so boring I rarely get any! :D
(Thanks for an awesome channel and a couple of huge hugs from a Swedish fan!)
Also, I mismatch my socks on purpose! It's a lot more fun that way. And I'm almost 40 years old, haha!
+Poxz212 Never lose that spark! Age is just a number! Enjoy you socks funky! 💜🧦
OMG I wonder if I have an auditory processing disorder- I mean I doubt it... but it’s a possibility- I hate crowds and have anxiety with being in them unless I prepare beforehand... I get super anxious when they are like stadium type crowds. Hmm, I’m going to look it up. And apparently everyone believes my hearing is off... hmm... good to know :). I also hope you feel better soon love! Happy New Year🎆✨- may this year bring you nothing but the BEST of health and happiness always♥️
Whenever I start a new medication, I research it. It helps familiarize myself with how the drug works and which drugs are similar. I also make sure to check out side effects and interactions. It’s a good thing to get used to doing.
i just saw a neurologist and am waiting for a neuropsych evaluation as well. the doc told me it could take up to 8 hours (the length depends on how many areas of the brain they have to assess) i made sure to tell him about the problems with auditory processing. also waiting for an MRI, which i sincerely doubt will show anything major.
if you get the neuropsych before me, i hope to get a review of the whole testing.
I remember watching Sweeney Todd in high school choir... fell in love with it waaaay back then (before Johnny Depp was discovered😉). I'm also a fan of Camelot. I really hope you figure out what you're going to do with your knee soon. I think having a discussion with a surgeon would be helpful.
I have the same village as you!
I hate pain scales. 😡
They really frustrate me!
Christina, have you heard about avocado plant from seed? It's so cool to watch it grow, try it 😊
Have an awesome Christmas! :)
I was on zolair for chronic urticaria. I have had them for 10 years!! The zolair gave me extreme muscle weakness and hair loss!!
They have sock subscription boxes. Check out sock fancy.
Hi Christina!
It's definitely weird that they didn't regulate your dose of the Xolair more strictly. That kind of negligence will get someone killed someday. I'm also sorry your camera broke! I'm extremely clumsy (at least in part due to worsening EDS problems) and have broken many things in my life already, from stacks of plates to smartphone screens. So I usually won't even try picking up a camera. They're usually a lot heavier than phones and my fingers will just slide off of heavy things. (Maybe I should look into ring splints) Anyway I hope your camera gets fixed quickly!
Thanks for the reply on last week's video! The X-ray of my lungs did indeed come back clear. Which is good apart from the fact that it leaves questions unanswered. (I'd like to avoid adding another lung disease to my list of diagnoses if at all possible). But the bloodwork did show several new allergies, but not very clearly, and since I also have allergy-related GI issues I'm wondering if I may have a Mast cell disorder. I might take that up with my doctor soon. On the spinal instability; my neck is definitely quite hypermobile, and I have some back problems that could be consistent with it. And general nervous system related symptoms (including bladder and bowel issues, numbness in limbs and dizziness, amongst many other things), but I have no scoliosis, kyphosis or lordosis, at least not noticeably (I might have a 5 or so degree abnormality, but that's not uncommon and not something to worry about usually). Is it even possible to have spinal instability without some form of scoliosis?
Wednesdays are usually my medical appointment free days as well! So I get to have an easy day at home. I don't have nearly as much problems with sleeping though. I sleep like the dead, I barely even turn over. But I still manage to wake up with one to three dislocated joints every morning somehow. Also your knee movement thing at 28:27, me knees do that a lot too. I think It's just a muscle spasm or something like that. It usually stops on its' own. At 29:36, your dog is soooo cuuute!! Also the snow melted, so everyone here's finally acting normal again. On a positive note, my rehabilitation seem to be helping, so I'm very glad about that. And I found out that some people at the stables where our horses are at thought my younger sister (she's almost 5 years younger!) was older than me, and some random lady I have hydrotherapy with thought I was 4-5 years younger than I actually am. Not sure how I feel about that. Does anyone else ever get this?
I know my auditory processing issues got worse when I got chronic fatigue syndrome as I no longer have the energy required to process speech so it affects me way more than it used to as a kid. I also have no energy for therapy. For me I use subtitles, extra volume and reduced background noise on technology, text phones, emailing...I tend to avoid crowds and so on not yet found a good solution to deal with crowds or loud situations. I sometimes think you just have to accept somethings are impossible lol
I struggle more with strong accents than accents I've been bought up around
Hi Christina, as I may have told you both my sons had many proessing disorders, collectively they are known as sensory processing disorder. There are specialist OT's here in Au that deal just with all of them. I guess you may not have talked to too many people with babies and young children
I also love Sweeney Todd! I have all of the music in my phone and on my iPod 😊 Supernatural is amazing! Are you caught up? My sister and I love it and sadly, shamefully, we are behind by almost a season 😅 She made me watch SPN a few years ago and I made her watch Doctor Who and it's been a nice bonding experience for us. Whenever we send each other money or anything the question is always bitch and the answer is always jerk 😂 That's actually her text tone on my phone too Hahaha We're so cool 😎 Glad to see you smiling and upbeat enjoying your holidays. MERRY CHRISTMAS TO YOU AND YOUR FAMILY 👨👩👦👦🎄Sending love and gentle hugs from Canada xo
Nicole and Matthew
Midna and Theodore 😸😸
Link, Goron, Zelda, Zora, Kokiri, Poe, Gerudo, Fairy, Impa, Tom and Charlie 🐀x11
We always start with #1 too.
Why did your doctor give you the same dose as she did for someone so big??? Anyway I’m glad you found out what happened though. Sweeney Todd is an amazing movie I love your art for it, and are you wearing that days earrings when you open them in the advent calendar? Love seeing you all you getting all ready for Christmas I’m not feeling it this year so you helped me start to get in the mood xxx
+Miss Adventure She was saying that there is no FDA dosing instructions for this treatment. She explained that when they use it for asthma and hives there are specific dosing instructions, but because this is a new use of the drug they pretty much just recommend the same dose for everybody and she has been finding lately that its just too much for some patients, especially those of use who are fairly small. But its a lot of trial and error and doesn’t always present as a problem right away like in my case. Its a cumulative issue.
Christina Doherty I hope she is reporting back these findings to help others and very glad you have recovered from it. Xx
Come on up to Vancouver, Canada! I’ll buy you a ticket😊
My grandma had the same little church and ceramic figurens
Your mom's German pronounciation is great!!! Has she lived in Germany before? Sounds really great!
My family has that exact same nativity set!
Do you have a 3rd row? Or does the front seat fold in half? Either way would allow you to use the back of the seat instead of sitting at a weird angle (in case you haven't tried so yet!)
I'm new to your channel but I wanted to say happy early b day my little brother has the same birthday as you so just wanted to say HAPPY BIRTHDAY (I saw a comment when you bday was so yea trying not to sound creepy)
29:26- # sorta
😅
“You would be right but don’t kill my fun” 😂
You drew pregnant Helena 😂
+Tayla Robichaud hahaha sure did. I had to do them the justice they deserved 😂
i've been on Xolair in the past i have bad asthma and have cystic fibrosis as well
I have also auditory processing issues but for me it's part of my autism.
I am so fed up with medical paperwork. Especially now that ‘see attached’ is no longer an option.
On another note: I think your nails are done. What did you use and how long does it last?
Christina, I wanted to know if you got any pinched nerve like shakes. I have EDS but I am very new to the community and wondered if this happened
What side effects did you get from zolair? Is that why you went off it?
Hi Christina! Happy holidays :) Can you please link the succulent prescription box? Such a cute idea! I'd love to see you open them when you receive one! Hope you are doing well, much love
+BeckyElf It should be linked in the description. Is it now showing up for you?
I can't see it :O
+BeckyElf Weird! It comes up for me. Ill try to figure that out when ai get home later, But heres the link 😉. www.succulent.studio
Ooh, Sweeney Todd! One of my favourite movies. And I'm a vegetarian so I don't think that diet has much to do with it, lol.
+kikaria Haha yeah Its more just that I was figuring all the meat pie and ground up flesh stuff could be a turnoff 😂 But I would hope that it would be for anyone. My Mom made it about halfway through the movie, she was just so grossed out by it all hahaha
can you sleep semi on your side and semi on your tummy so the side you are laying on, that leg is straight and the other leg can be curled up to you? that is my number 1 favorite sleeping position.
Bumpy Back Roads if i’m imagining the position you’re describing, that my favorite too. sooo comfy. and i used to do that after my knee surgeries, a couples weeks afterwards while i still had to wear my brace locked straight.
Makes no sense how the dose is the same no matter how much you weigh!
I never understand why companies take ages to repair things...like some technology repairs here they send to Europe...why? Don't tech repairers exist in England? lol