My goodness, Christina! Emptying your stomach contents because of a mast cell reaction!!! With a smile on your face...you are amazing! I'm sure you have your moments, but your strength and positive attitude through it all definitely shine through. Praying for you, sweet girl!
+Sarah Poison Thank you! Hahaha you may not be saying that is you had to sit there and listen to me learn a new song 😂 But its all about the enjoyment of it and challenging myself. Its so so rewarding to hear myself create music again. Even if itll never quite be what it was before 💕
+Hope 1994 Im glad I got it up then! Haha I thought it was Sunday for some reason and then had to scramble this morning to get it up when I saw the date! 😂😂😂
Really appreciate you and whay you bring to the EDS community! You are always a highlight to our week! So sorry you had some downs this week but also soooo thankful you had some ups! It really does appreciate when we do feel better- this I get!
i have eds, and a lot of your similar core mobitities, but im also not religious and quite pessimistic, but you are sooooo relatable and lovely that ive come to watch your videos weekly and look forward to them. love you!
+Lucy Luckern Aww why thank you! We all have our beliefs and the things that help us get through life. Im glad that you find my videos to be relatable, I want this to feel like a safe space for everybody no matter what they believe and whatever walk of life they come from. When it comes down to it, we all have more in common than we have differences. And don’t worry, I have developed a lovely morbid and dark sense of humor through all this. Like I said, we all have our things 😂
I know I tell you this often but I swear I could and would watch your vlogs ALL day! I wish they were actually longer, I know you already do alot with all that you have going on health wise I just genuinely enjoy and LOVE watching your weekly vlogs :) so keep em coming 😚
+Stephanie Dunn Awww thank you! Maybe I should do a live stream or something sometime to just hang out with you Guys unedited... thats a little daunting but could be fun haha 💕
Oh my gosh, I'm so sorry you had to go through that. Being alone surely amplifies the fear. I am so like you regarding not going to the ER and will avoid it at all costs. I didn't go when I had my meningitis attacks, my kidney stones, or my gallstones. But....now, it's sorta backfiring on me. I'm getting ready to file for disability and some of my important issues weren't documented because I didn't go to ER, or doctors. Just food for thought that having everything documented may help you in the future. I don't know if I will go to ER still, but I will make sure my Dr knows what happens. Loved the roses! Yay Frey Life. I just worse my shirt for first time. Great piano! I wish I could play. I have one but can only play a very small basic somgs. It's on my bucket list to learn. Score on the fingerless gloves! I'm trying to teach myself too! You'll have to teach me the Christina Stitch! Check out YarnUTopia by Nadia on youtube. She has amazing tutorials. xoxoxoxo hope the rest of your week goes better. 😍
I remember when you only had like 2 or 3 comments on your videos and now look where you are you have made such an impact on people and it is so Important for people to have that impact
Oh my gosh I feel so horrible now. Here I am whining to you about being diagnosed with h e d s at the age of 53 and you're having mini-strokes. You are an amazing young lady you know that right? I started watching your vlogs when I started researching why I was having issues that they couldn't really put labels on so they came up with this diagnosis of lupus and Joint hypermobility and emphysema and and connective tissue disorder. So in all my trying to figure out what all these things were I ran across ehlers-danlos syndrome and I was like that sounds like me sounds like me for 90% of my life. Had I at the age of 18 or 19 known that I had some mysterious thing going on with me that they never would be able to fix I don't know that I would be able to be as positive as you are. I still struggle with that and I don't know how to stay so positive but I'm working on it. By the way the hand warmers are adorable. I've been using them for 3 or 4 years my adopted mother in law started making them for me and sending them to me from Arizona which I think is kind of funny if you think about it hand warmers being made and Arizona sent to someone who lives where the average winter temperature is 35 degrees is kind of funny I grew up in freezing cold Wisconsin and now live in Washington where it's rainy and cold but not nearly as cold as Wisconsin but I still dress like I'm in Wisconsin if I'm going outside because of the damp and the cold or different here and it makes everything hurt you can make cute little boot Toppers that go just inside the top of your boot and over the top of your knees to keep your knees warm there are Bunches of things that you can crochet to help with keeping you warm. I hope that this week is a better week for you and I hope that you stay warm and things stay where they're supposed to and that everything goes well.
Teresa Elza- Fry I'm 52 and I love watching Christina too! I was just diagnosed in January with EDS. I'm living just south of Wisconsin in Freeport Illinois and it's getting pretty cold...
Wow, what a week you had! I'm sorry to hear about the TIA--Please have them check for Lupus Anticoagulant (sticky blood). We have spoken about that before. No, it's not Lupus. Your Hematologist will be familiar with it, but probably not most of your other doctors. That's what I have. Very familiar with Lovenox---does it burn going through your port? It burns like crazy when I have to inject into my stomach area. And the bruising is intense! *shivers* Glad I don't have to do it that often. I hope my home state of VA was good to you!
+Beth Wade They actually did say I had “sticky blood!” But then just glazed over that and starred talking about something else. I can’t wait to see this new doctor. Im really unimpressed with this one now. But yeah, it burns like nothing else! And now I have so manny bruises and scar tissue plus very little fat that um struggling to get the needle in
My husband had a TIA once. He started talking nonsense. It was very strange. He did get better very soon. I totally know what you mean about how happy you are after you've gotten well from feeling ill. Glad you're better.
Looks like you had a stressful week. Do health issues ever make you anxious? You seem so mellow about it all which is great. I really enjoy your vlogs and hope your appointments went well!
I so agree amazon is very extra with their packaging! I get so many huge boxes that have small items inside it’s crazy! I hate that you had a TIA bless you I hope things calm down for you so you can recover. Plus you talented lady so creative piano and knitting and crochet and painting wow very talented xx
Can we start with love the glove warmers. Honestly living in the UK you need things to keep you warm, of course now being the colder months. So don't blame ya mum and sister wearing it, and the colourful one you wore :) creative, play the piano, make jewellery, arty, no ends to your talent.
Your fingerless gloves look so nice and warm! I love the yarn you used, once i learn to crochet im going to have to try and name a set!!! I have had a pretty rough past 2 days and it took me 4 different times to completely watch your vlog :(. I was so disappointed because i cannot wait until your new videos are up!
Ps- I am OBSESSED with The Frey Life❤️✨... I actually found YOUR channel through @TheFreyLife. I’ve known Mary and Peter and have followed their channel forever! They also, as you probably know- reside in upper MA near the NH border kind of :). They’re north of Boston I believe. They are amazing :). Glad you’re friends with them!
It really is designed to be hard for patients to get their meds... because that keeps the demand high so then the price high! i work for a University and they recently switched their pharmacy of choice to CVS and we were worried i would be forced to use CVS because i am on a fentanyl patch and dilaudid for break through pain i can’t handle... and that would mean i can only get a weeks supply at a time... which is ridiculous. especially when we take a two week vacation from time to time. thankfully i am not forced to use their pharmacy of choice.
I'm so glad to hear how well your TMJD treatment is going! first obviously for your own sake, but also because I have had it as long as I can remember and it's SO painful all the time, but no dentist have known what to do with me at all since I don't want any kind of surgery (i just know I dont actually need it!). This gives me hope to keep looking for localish doctors that might actually be able to help me, too! Thank you!
One way to make wristwarmers is by making a square/rectangle (depending on how long you want them to be) and then attaching one side to the another with a space for your thumb (attaching the long sides together if you made a rectangle). I love to knit and I used to knit wristwarmers that way a lot, it's really quick. You could probably make fun granny square ones if you did it like that.
They do have a system. You need to call and tell them to order it. You can do that. It's not their responsibility to keep up on your medications, it's yours. Sorry if it sounds harsh but I was a pharmacy tech and if you think about how many people are seen in one day at the pharmacy how can it be expected of them to insure all those people get what you are suggesting?
+Bliss Rose I think you may have replied to the wrong comment. But we do call. We call a few days in advance usually and they said that they cannot order since It it too soon to refill. We never have this issue with other meds. Its strange. They said that its very expensive and so they won’t order it until the day the refill is valid but then that day is the day I need it. Its very strange. We want to try to request a meeting with the head pharmacist who is annoyed by it as well and see if we can get the order written differently or something
It is so no fair. We need those meds. I have over 5 maybe 7 diagnosed illnesses. ENOUGH OF THEM PLAYING With OUR LIVES. SOME PEOPLE TO The POINT OF GOING OVER THE EDGE. YOU Would MAKE A PERFECT VOICE FOR US
Your Vlogs help me so much! I'm going through my own EDS diagnosis journey, and your upbeat attitude never fails to make me feel better about everything that I'm going through. My boyfriend bought me one of you moon lockets with a labradorite stone and I can't wait! Going to keep my stomach medication in there - just have to wait for it to ship to the UK!
One way you could do a vogmask giveaway is by not buying it until the winner has been chosen and allow them to pick the style and size after, another would be to host a poll and have people say what color/style they'd want and have the size thing done that way as well. I hope this week is starting off better than last week did, I'm glad you were doing well by the end of the week. I hope all of your appointments go well and they help. It's not even that cold where I live but my joints are killing me, I brought out my leg warmers halfway through this to hopefully warm my knee up and get it to stop hurting. Love and Spoons!!
I have thrombophilia which is a clotting disorder I think it's a protein C deficiency. I'm on blood thinners all the time and I find it so easy here in England we just go to the doctors and we get prescriptions and I get a prescription given me every two months without me having to even ask the doctor now. It must be so hard for you in America. Gentle hugs poppy xxxx
Glad the lucky rice sock made it!! I love mine (: I'm so glad you got your hip kinda sorted! I understand long car rides and EDS =/ or plane ride train rides. Long movies... Man! EDS seems to creep it's way into everything. I'm so sorry that you had a horrible mast cell reaction whilst trying to treat your mast cell. Now I'm afraid to try it cause something I am eating or my laundry soap or something is giving me rashes on my arms and legs that are so itchy. MCAD for you. I had a TIA and forgot all but one piece of information. I remember that awful feeling. Luckily I was only inpatient a few days until most of my memory came back. It is definitely scary
uggghhh i hate the whole staring thing. i get it all the time, since i’m kinda bald. i just look at them and are like, “do i have a booger in my nose?” the shock on their faces is priceless.
For a vogmask I think I’d either be between a small or medium. Weight wise I would fit a medium but my face is pretty small so I feel like the small size would fit me better.
+Liane Peterson Campbell Oh im not sure! Ill have to check when I get home. It was a gift left to my mother by a friend of hers when she was younger. She is the real piano player of the house, although we have all kind of fallen away from the hobby. We all have such different sleep schedules its hard to find time when nobody is sleeping 😂
Oh, cold weather no matter how much I love the rain and the fog and everything in between is my worst trigger for my joint pain. And I live in the tropics, guess I wont be visiting up north during the winter any time soon
Christina Doherty i think that n the 1st snow are the only things I will love to endure the cold weather for. Everything else can be done at mid spring lol
Congratulations on your one year of vlogging your EDS! Your first week of your second year has been really challenging. o_0 Take care and stay warm! God Bless you, your mom and the rest of the family.
I didn’t know you loved here in MA! What part or area? I am on the Southcoast of MA... near the Cape! And omg- that’s awful, I’m hoping you feel better soon! Praying for you🙏🏼😘❤️✨
Flovent really helps me keep my lungs open - I hope it ends up doing the same for you! I hope you can get your cromolyn soon, I was off mine for a week once and it was a real struggle 😣 sending good vibes ❤️
With the Vogmask, my weight matches the large but it's too big for my face. I really don't like Vogmask as they don't work for those that wear glasses that well. It fogs them up. I only use my Vogmask when I need to put something on quickly. I have a ugly 3M too but it works okay. Sorry to hear about your mini stroke and all. We can only get as normal as we can. 😀
I know your family does so much for you and knows best what to do, but I really feel like they shouldn't leave you alone at the house. It just seems so dangerous with all of the things that could happen that you can't treat yourself for. I'm so glad you ended up ok with the TIA, my Great Aunt had many TIAs so I know they can be very scary!
Do you go to school? I've been having to take an emergency inhaler for my asthma every 4 hours for the past few days and the steroids side effects make me feel so weak. I feel bad asking for extensions in class, but medical illnesses really make some things difficult. How do you manage that? Do you ever feel bad for asking for more time to do things?
+Abigail Jimenez Im not in school anymore, unfortunately I reached a point in high school where I just wasn’t able to continue due to my health and need for surgeries. Unfortunately my school was very unhelpful and at the time I didn’t know what accommodations I had the right to. Im just now restarting my journey towards school again and it really is overwhelming. I can definitely relate to having to take your inhaler in school and feeling terrible! I used to do that too and my hands shook so much I couldn’t take notes. I have learned a lot though since leaving about my rights as a student and how they did not meet them. You have the right to any adaptions that will give you the equal opportunity to succeed. Definitely request a meeting with your guidance counselor and your parents to discuss a 404 plan or an IEP. Come equipped with a list of your diagnosis and challenges and think about ways that the teachers could maybe assist you. Such as extended time on tests and assignments. Its not shameful to ask for help when you need it. You aren’t asking for anything more than just an equal opportunity. If your hands shake from your meds for instance then maybe you can have a classmate or the teacher give you a photocopy of the days notes. If you feel weak and are having a hard time carrying books you can request two sets. One set to keep at home for your use and another set to be kept in the classroom so you don’t need to carry them. You can even have an accommodation where another student can help you transport your backpack to your next class. Don’t feel bad asking for it, believe me im sure one of your friends will be happy to have a legitimate reason to skip the first few minutes of their class. Once we even had a student who couldn’t make the trip down the stairs to the lunchroom, so I would go down and get it for her and a few of us would sit up in the classroom and eat with her. There are a million things. If your school tried to fight you on it just remind them that it is your right as a student by law. You can even hire an education advocate who can help you much more than me when it comes to your rights and some reasonable accommodations 💜
My mom had several TIAs when I was little. They never really figured out the cause but she's fine. Must have been a little scary for you though! It can be very annoying to get a prescription filled! I get that struggle.
+Lizzysilvers Its so nice when they make them in “easy.” Hahaha Im not quite able to get back to my old books so far so I really appreciate having just the melody and fun bits. I think I have the “easy” version of just about every musical 😂The Evita and Wicked ones are really good too! I think wicked may have been a bit higher level than this one. But still fairly easy to pick up if you know the tunes
Just a thought....be careful ordering EOs from Amazon...it’s definitely possible for the bottles to be resealed with goodness knows what inside and I’d hate for you to have a reaction when you totally didn’t deserve to be ripped off by someone!! From the source is the way to go 😉
So I have POTS, MCAS, and suspected EDS. Could the passing out with severe shaking be from a Mast Cell reaction or just usual POTS? I had been on a new antibiotic (stupid uti) and got SO sick. I passed out in the hall, nearly threw up on myself (luckily I crawled to the bathroom on time) and just shook violently for hours! It never even occurred to me that I could have been allergic to it. I did end up switching to a different one and felt way better!!
I have TMJ and I live near Virginia. I was wondering what the name of your doctor is because I can’t seem to get relief. Thank you!!! Also I also have EDS, not as bad as yours, but it’s awesome to see a fellow EDSer.
+Anna Krebs Normally I don’t name doctors publicly (in the comments) but they are definitely the “spread the word” kind of practice lol. They are great! Here is a link to their site! www.jntdental.com
+Maya Bewsher Oh boy, it changes so much hahaha but I would have to agree, wandering child gets me every time. Particularly that little violin part that it enters in with after she runs from rehearsals. They changed that piece slightly for the tour and it made me so sad! I also have a soft spot for music of the night ❤️
I know, I love that violin solo. I can't believe it was altered. POTO just makes the world right. Bad days are eased with musical and film scores running through my iPod.
The way medication costs in the US work is still shocking to me. Here in Aus we have something called the pharmaceutical benefits scheme, which approves meds for certain uses, and if you're prescribed them they don't cost more that $37.50, or $5.60 for people on the dole. Of course the system isn't perfect, eg my brother takes a med where the approved amount is 3 doses, so he ends up paying about $100 to get his script filled because it's for more, but it still seems so strange that drug companies can charge so much for things people need to survive.
+Ruby Q Interesting! I always like to hear how things are done overseas. I am really pretty lucky most of the time, I am usually mostly covered for my costs because of my insurance and the secondary insurance I gained with disability. But there are many things that are unfortunately not covered and many people who aren’t as lucky with their insurance or don’t have any at all.
Unfortunately all of my medications are private scripts, despite qualifying for PBS I still have to pay full price for my medications. That is one huge flaw of PBS for those of us with rare conditions who rely on private scripts to get by
Woah, in the UK we pay £8.60 per prescription no matter what it is, and anybody who has more than one medication to take will pay around £100 a year for as many medications as you need
In Germany we pay 5€ per medication with a Maximum of 1000€ per year (i think). Even the Calcium I need to treat my hypoparathreoidis is covered after a letter from my physician (supplements are only covered to treat, not to prevent).. Only off label uses are not always covered and basic things like low level pain killers and nasal spray. The American system is TrueType weird and atrocious!
+Mandy Reynolds I used to do that a lot more. I still do it when I am worried about med side effects. But I have found over the years my body tend to react wether its a single crumb or the whole cake 😂 So I kind just went for it this time. I should definitely have done it more slowly, but I was impatient lol
I love your fingerless gloves💜 Those are cute! If my eyes would clear up, I might give that a try myself😉 I've managed a large blanket, a few scarves, hats and several odd pieces.
The world of chronic illnesses and pharmaceuticals is so warped and it's totally not fair to the people who rely on these meds and need to be on stuff long term!
As a crocheter (hooker 😜) I can safly say that your gloves look very well made. That's how all the cool patterns and stitches get made. Somebody gets bored with the same old stitch and wants something new.
Christina Doherty I really like the second pair that you made, the thinner ones that can be used more often because they are not so bulky. I am suffering really bad with my fingers and toes. I’m so sorry that you are going through hell with your meds, I think that should be a put on the EDS symptoms list because I don’t know anyone who doesn’t have problems with it. I’m on opioids and it’s a nightmare.😢 Sending you gentle hugs from Wales 🏴 and looking forward to next weeks vlog. 💕💞💕xXx
My goodness, Christina! Emptying your stomach contents because of a mast cell reaction!!! With a smile on your face...you are amazing! I'm sure you have your moments, but your strength and positive attitude through it all definitely shine through. Praying for you, sweet girl!
I think that is so badass how you've retaught yourself piano, especially with thinking a beat ahead for one hand! Very impressed.
+Sarah Poison Thank you! Hahaha you may not be saying that is you had to sit there and listen to me learn a new song 😂 But its all about the enjoyment of it and challenging myself. Its so so rewarding to hear myself create music again. Even if itll never quite be what it was before 💕
@@christinadoherty3212 girl, I think it's awesome, too! Seriously!
I honestly wait for your vlogs every single Monday! You have no idea how excited I get when I get the notification !!
+Hope 1994 Im glad I got it up then! Haha I thought it was Sunday for some reason and then had to scramble this morning to get it up when I saw the date! 😂😂😂
Me too!
Really appreciate you and whay you bring to the EDS community! You are always a highlight to our week! So sorry you had some downs this week but also soooo thankful you had some ups! It really does appreciate when we do feel better- this I get!
Im sorry you have been through so much lately. Im proud of your attitude and how you do what you need to despite your bad day. Superwoman!
i have eds, and a lot of your similar core mobitities, but im also not religious and quite pessimistic, but you are sooooo relatable and lovely that ive come to watch your videos weekly and look forward to them. love you!
+Lucy Luckern Aww why thank you! We all have our beliefs and the things that help us get through life. Im glad that you find my videos to be relatable, I want this to feel like a safe space for everybody no matter what they believe and whatever walk of life they come from. When it comes down to it, we all have more in common than we have differences. And don’t worry, I have developed a lovely morbid and dark sense of humor through all this. Like I said, we all have our things 😂
Christina Doherty you are seriously the best hahaha. the morbid jokes are my specialty, i think it comes with the territory cx
I know I tell you this often but I swear I could and would watch your vlogs ALL day! I wish they were actually longer, I know you already do alot with all that you have going on health wise I just genuinely enjoy and LOVE watching your weekly vlogs :) so keep em coming 😚
+Stephanie Dunn Awww thank you! Maybe I should do a live stream or something sometime to just hang out with you Guys unedited... thats a little daunting but could be fun haha 💕
You should do a casual winter glove giveaway too! Not terribly expensive and pretty easy to make! I hope your week is going well so far! ❤
Oh my gosh, I'm so sorry you had to go through that. Being alone surely amplifies the fear. I am so like you regarding not going to the ER and will avoid it at all costs. I didn't go when I had my meningitis attacks, my kidney stones, or my gallstones. But....now, it's sorta backfiring on me. I'm getting ready to file for disability and some of my important issues weren't documented because I didn't go to ER, or doctors. Just food for thought that having everything documented may help you in the future. I don't know if I will go to ER still, but I will make sure my Dr knows what happens. Loved the roses! Yay Frey Life. I just worse my shirt for first time. Great piano! I wish I could play. I have one but can only play a very small basic somgs. It's on my bucket list to learn. Score on the fingerless gloves! I'm trying to teach myself too! You'll have to teach me the Christina Stitch! Check out YarnUTopia by Nadia on youtube. She has amazing tutorials. xoxoxoxo hope the rest of your week goes better. 😍
OMG, Christina. What a hideous day you had! Soooo glad you came through it OK. You are so strong! ❤️❤️
+Lois Cassels Lol that was definitely not my finest... but im certainly appreciating the good days. 💜
I remember when you only had like 2 or 3 comments on your videos and now look where you are you have made such an impact on people and it is so Important for people to have that impact
Oh my gosh I feel so horrible now. Here I am whining to you about being diagnosed with h e d s at the age of 53 and you're having mini-strokes. You are an amazing young lady you know that right? I started watching your vlogs when I started researching why I was having issues that they couldn't really put labels on so they came up with this diagnosis of lupus and Joint hypermobility and emphysema and and connective tissue disorder. So in all my trying to figure out what all these things were I ran across ehlers-danlos syndrome and I was like that sounds like me sounds like me for 90% of my life. Had I at the age of 18 or 19 known that I had some mysterious thing going on with me that they never would be able to fix I don't know that I would be able to be as positive as you are. I still struggle with that and I don't know how to stay so positive but I'm working on it.
By the way the hand warmers are adorable. I've been using them for 3 or 4 years my adopted mother in law started making them for me and sending them to me from Arizona which I think is kind of funny if you think about it hand warmers being made and Arizona sent to someone who lives where the average winter temperature is 35 degrees is kind of funny I grew up in freezing cold Wisconsin and now live in Washington where it's rainy and cold but not nearly as cold as Wisconsin but I still dress like I'm in Wisconsin if I'm going outside because of the damp and the cold or different here and it makes everything hurt you can make cute little boot Toppers that go just inside the top of your boot and over the top of your knees to keep your knees warm there are Bunches of things that you can crochet to help with keeping you warm. I hope that this week is a better week for you and I hope that you stay warm and things stay where they're supposed to and that everything goes well.
Teresa Elza- Fry I'm 52 and I love watching Christina too! I was just diagnosed in January with EDS. I'm living just south of Wisconsin in Freeport Illinois and it's getting pretty cold...
Wow, what a week you had! I'm sorry to hear about the TIA--Please have them check for Lupus Anticoagulant (sticky blood). We have spoken about that before. No, it's not Lupus. Your Hematologist will be familiar with it, but probably not most of your other doctors. That's what I have. Very familiar with Lovenox---does it burn going through your port? It burns like crazy when I have to inject into my stomach area. And the bruising is intense! *shivers* Glad I don't have to do it that often. I hope my home state of VA was good to you!
+Beth Wade They actually did say I had “sticky blood!” But then just glazed over that and starred talking about something else. I can’t wait to see this new doctor. Im really unimpressed with this one now. But yeah, it burns like nothing else! And now I have so manny bruises and scar tissue plus very little fat that um struggling to get the needle in
My husband had a TIA once. He started talking nonsense. It was very strange. He did get better very soon. I totally know what you mean about how happy you are after you've gotten well from feeling ill. Glad you're better.
+barbh1 Oh I do hope you husband is doing well now. Its so scary to be confused when you are normally so clearheaded.
Looks like you had a stressful week. Do health issues ever make you anxious? You seem so mellow about it all which is great. I really enjoy your vlogs and hope your appointments went well!
I so agree amazon is very extra with their packaging! I get so many huge boxes that have small items inside it’s crazy! I hate that you had a TIA bless you I hope things calm down for you so you can recover. Plus you talented lady so creative piano and knitting and crochet and painting wow very talented xx
Bless your heart I can say i know how you feel with not knowing what is going on makes you thankful for each day that is for sure.
+Samantha Jiminez 💜
Love The Frey Life stuff! You got Mary’s package with all things Mary! Glad your day was better than yesterday!
+ilobilo 💜💜💜
Can we start with love the glove warmers. Honestly living in the UK you need things to keep you warm, of course now being the colder months. So don't blame ya mum and sister wearing it, and the colourful one you wore :) creative, play the piano, make jewellery, arty, no ends to your talent.
Your fingerless gloves look so nice and warm! I love the yarn you used, once i learn to crochet im going to have to try and name a set!!! I have had a pretty rough past 2 days and it took me 4 different times to completely watch your vlog :(. I was so disappointed because i cannot wait until your new videos are up!
Ps- I am OBSESSED with The Frey Life❤️✨... I actually found YOUR channel through @TheFreyLife. I’ve known Mary and Peter and have followed their channel forever! They also, as you probably know- reside in upper MA near the NH border kind of :). They’re north of Boston I believe. They are amazing :). Glad you’re friends with them!
It really is designed to be hard for patients to get their meds... because that keeps the demand high so then the price high!
i work for a University and they recently switched their pharmacy of choice to CVS and we were worried i would be forced to use CVS because i am on a fentanyl patch and dilaudid for break through pain i can’t handle... and that would mean i can only get a weeks supply at a time... which is ridiculous. especially when we take a two week vacation from time to time. thankfully i am not forced to use their pharmacy of choice.
I'm so glad to hear how well your TMJD treatment is going! first obviously for your own sake, but also because I have had it as long as I can remember and it's SO painful all the time, but no dentist have known what to do with me at all since I don't want any kind of surgery (i just know I dont actually need it!). This gives me hope to keep looking for localish doctors that might actually be able to help me, too! Thank you!
One way to make wristwarmers is by making a square/rectangle (depending on how long you want them to be) and then attaching one side to the another with a space for your thumb (attaching the long sides together if you made a rectangle). I love to knit and I used to knit wristwarmers that way a lot, it's really quick. You could probably make fun granny square ones if you did it like that.
They do have a system. You need to call and tell them to order it. You can do that. It's not their responsibility to keep up on your medications, it's yours. Sorry if it sounds harsh but I was a pharmacy tech and if you think about how many people are seen in one day at the pharmacy how can it be expected of them to insure all those people get what you are suggesting?
+Bliss Rose I think you may have replied to the wrong comment. But we do call. We call a few days in advance usually and they said that they cannot order since It it too soon to refill. We never have this issue with other meds. Its strange. They said that its very expensive and so they won’t order it until the day the refill is valid but then that day is the day I need it. Its very strange. We want to try to request a meeting with the head pharmacist who is annoyed by it as well and see if we can get the order written differently or something
+Larkin Good idea! I didn’t even think of just using my squares! That also sounds like a great coffee holder too! Christmas ideas... 😊
It is so no fair. We need those meds. I have over 5 maybe 7 diagnosed illnesses. ENOUGH OF THEM PLAYING With OUR LIVES. SOME PEOPLE TO The POINT OF GOING OVER THE EDGE. YOU Would MAKE A PERFECT VOICE FOR US
Your Vlogs help me so much! I'm going through my own EDS diagnosis journey, and your upbeat attitude never fails to make me feel better about everything that I'm going through.
My boyfriend bought me one of you moon lockets with a labradorite stone and I can't wait! Going to keep my stomach medication in there - just have to wait for it to ship to the UK!
HUGS to you!! Not sure how you handle all you handle...Love you!
One way you could do a vogmask giveaway is by not buying it until the winner has been chosen and allow them to pick the style and size after, another would be to host a poll and have people say what color/style they'd want and have the size thing done that way as well. I hope this week is starting off better than last week did, I'm glad you were doing well by the end of the week. I hope all of your appointments go well and they help. It's not even that cold where I live but my joints are killing me, I brought out my leg warmers halfway through this to hopefully warm my knee up and get it to stop hurting. Love and Spoons!!
Dana Max that’s what I was going to say!
+Dana Max Good idea! I will definitely do it that way! Thanks guys! That makes it easier on me anyway 😊
Your piano playing is awesome!!! I love the gloves!!!
I have thrombophilia which is a clotting disorder I think it's a protein C deficiency. I'm on blood thinners all the time and I find it so easy here in England we just go to the doctors and we get prescriptions and I get a prescription given me every two months without me having to even ask the doctor now. It must be so hard for you in America. Gentle hugs poppy xxxx
Glad the lucky rice sock made it!! I love mine (: I'm so glad you got your hip kinda sorted! I understand long car rides and EDS =/ or plane ride train rides. Long movies... Man! EDS seems to creep it's way into everything. I'm so sorry that you had a horrible mast cell reaction whilst trying to treat your mast cell. Now I'm afraid to try it cause something I am eating or my laundry soap or something is giving me rashes on my arms and legs that are so itchy. MCAD for you. I had a TIA and forgot all but one piece of information. I remember that awful feeling. Luckily I was only inpatient a few days until most of my memory came back. It is definitely scary
uggghhh i hate the whole staring thing. i get it all the time, since i’m kinda bald. i just look at them and are like, “do i have a booger in my nose?” the shock on their faces is priceless.
Thank you for having me!
For a vogmask I think I’d either be between a small or medium. Weight wise I would fit a medium but my face is pretty small so I feel like the small size would fit me better.
Couldn't quite tell, but your piano looks like the one I played in my younger years...a Kranich & Bach ❤❤
I always enjoy your vlogs!
+Liane Peterson Campbell Oh im not sure! Ill have to check when I get home. It was a gift left to my mother by a friend of hers when she was younger. She is the real piano player of the house, although we have all kind of fallen away from the hobby. We all have such different sleep schedules its hard to find time when nobody is sleeping 😂
Oh, cold weather no matter how much I love the rain and the fog and everything in between is my worst trigger for my joint pain. And I live in the tropics, guess I wont be visiting up north during the winter any time soon
+sayurimei Yeah... I maybe wouldn’t recommend the north then 😂 Although there are few things as lovely as seeing the foliage in Boston in the fall.
Christina Doherty i think that n the 1st snow are the only things I will love to endure the cold weather for. Everything else can be done at mid spring lol
Congratulations on your one year of vlogging your EDS! Your first week of your second year has been really challenging. o_0 Take care and stay warm! God Bless you, your mom and the rest of the family.
I didn’t know you loved here in MA! What part or area? I am on the Southcoast of MA... near the Cape! And omg- that’s awful, I’m hoping you feel better soon! Praying for you🙏🏼😘❤️✨
Flovent really helps me keep my lungs open - I hope it ends up doing the same for you! I hope you can get your cromolyn soon, I was off mine for a week once and it was a real struggle 😣 sending good vibes ❤️
With the Vogmask, my weight matches the large but it's too big for my face. I really don't like Vogmask as they don't work for those that wear glasses that well. It fogs them up. I only use my Vogmask when I need to put something on quickly. I have a ugly 3M too but it works okay. Sorry to hear about your mini stroke and all. We can only get as normal as we can. 😀
I wear the large in the Vogmask. Never tried a medium and went right for large. It still adjusts small enough and has good coverage.
Katie, the medium is much shorter from nose to chin. I kinda like Cambridge better I can wear med or large in them and they hold up better too.
+Katie Thats what I figured. That is why my last giveaway was a large. I figured it was more adjustable. Its better to be a bit big than a bit small.
I know your family does so much for you and knows best what to do, but I really feel like they shouldn't leave you alone at the house. It just seems so dangerous with all of the things that could happen that you can't treat yourself for. I'm so glad you ended up ok with the TIA, my Great Aunt had many TIAs so I know they can be very scary!
Sending you my love 💜
+Charlie Dickinson Thank you! ❤️
Do you go to school? I've been having to take an emergency inhaler for my asthma every 4 hours for the past few days and the steroids side effects make me feel so weak. I feel bad asking for extensions in class, but medical illnesses really make some things difficult. How do you manage that? Do you ever feel bad for asking for more time to do things?
+Abigail Jimenez Im not in school anymore, unfortunately I reached a point in high school where I just wasn’t able to continue due to my health and need for surgeries. Unfortunately my school was very unhelpful and at the time I didn’t know what accommodations I had the right to. Im just now restarting my journey towards school again and it really is overwhelming. I can definitely relate to having to take your inhaler in school and feeling terrible! I used to do that too and my hands shook so much I couldn’t take notes. I have learned a lot though since leaving about my rights as a student and how they did not meet them. You have the right to any adaptions that will give you the equal opportunity to succeed. Definitely request a meeting with your guidance counselor and your parents to discuss a 404 plan or an IEP. Come equipped with a list of your diagnosis and challenges and think about ways that the teachers could maybe assist you. Such as extended time on tests and assignments. Its not shameful to ask for help when you need it. You aren’t asking for anything more than just an equal opportunity. If your hands shake from your meds for instance then maybe you can have a classmate or the teacher give you a photocopy of the days notes. If you feel weak and are having a hard time carrying books you can request two sets. One set to keep at home for your use and another set to be kept in the classroom so you don’t need to carry them. You can even have an accommodation where another student can help you transport your backpack to your next class. Don’t feel bad asking for it, believe me im sure one of your friends will be happy to have a legitimate reason to skip the first few minutes of their class. Once we even had a student who couldn’t make the trip down the stairs to the lunchroom, so I would go down and get it for her and a few of us would sit up in the classroom and eat with her. There are a million things. If your school tried to fight you on it just remind them that it is your right as a student by law. You can even hire an education advocate who can help you much more than me when it comes to your rights and some reasonable accommodations 💜
My mom had several TIAs when I was little. They never really figured out the cause but she's fine. Must have been a little scary for you though!
It can be very annoying to get a prescription filled! I get that struggle.
AH I live in Virginia! Hope you feel better next week than you did this week!
activated Charcoal helps with adverse reactions. God bless you
"when you make one hand warmer...you have to make another" XD I have never related to anything so hard in my life XD
+Hannah Walls Thank you! Lol that really is a dilemma! Im just glad I didnt try to make a sock or something! 😂
I HAVE THAT PIANO BOOK TOOOOO XD (I’ve messaged you before I’m Crona I just got so hyped when I saw that book, I love Phantom)
+Lizzysilvers Its so nice when they make them in “easy.” Hahaha Im not quite able to get back to my old books so far so I really appreciate having just the melody and fun bits. I think I have the “easy” version of just about every musical 😂The Evita and Wicked ones are really good too! I think wicked may have been a bit higher level than this one. But still fairly easy to pick up if you know the tunes
They do come with a key.Do you have Coram or what provider.Hopefullt Coram just give them a call and request it and they even have pole clamps too.
I had six strokes, so I understand! It sucks!
Pretty sure it’s illegal to paint quarters, what a rebel
+Lauren Doherty I purposely used nail polish so it would come right off with acetone 😂. You know me.... never a rebel hahaha
You two are so funny. 😂
I have had a couple TIA's and there worried i will have a full stroke
"I'm gonna wave." Hahaha awesome :)
Amazon has sent me the most absurdly large packages for the smallest of items before
Just a thought....be careful ordering EOs from Amazon...it’s definitely possible for the bottles to be resealed with goodness knows what inside and I’d hate for you to have a reaction when you totally didn’t deserve to be ripped off by someone!! From the source is the way to go 😉
So I have POTS, MCAS, and suspected EDS. Could the passing out with severe shaking be from a Mast Cell reaction or just usual POTS? I had been on a new antibiotic (stupid uti) and got SO sick. I passed out in the hall, nearly threw up on myself (luckily I crawled to the bathroom on time) and just shook violently for hours! It never even occurred to me that I could have been allergic to it. I did end up switching to a different one and felt way better!!
I have TMJ and I live near Virginia. I was wondering what the name of your doctor is because I can’t seem to get relief. Thank you!!! Also I also have EDS, not as bad as yours, but it’s awesome to see a fellow EDSer.
+Anna Krebs Normally I don’t name doctors publicly (in the comments) but they are definitely the “spread the word” kind of practice lol. They are great! Here is a link to their site! www.jntdental.com
Christina Doherty Thank you
Love the video! Wish you well, I hope your insurance covers you medicines!!!🌹🌷🌹🌷🌹🌷⚜️
Christina, my fellow phan, what is your favourite POTO song or music? Mine would be Wandering Chld, I always cry at that scene. But, I love it all
+Maya Bewsher Oh boy, it changes so much hahaha but I would have to agree, wandering child gets me every time. Particularly that little violin part that it enters in with after she runs from rehearsals. They changed that piece slightly for the tour and it made me so sad! I also have a soft spot for music of the night ❤️
I know, I love that violin solo. I can't believe it was altered. POTO just makes the world right. Bad days are eased with musical and film scores running through my iPod.
What kind of EDS do you have? You seem to have a lot of vascular issues, so I was wondering if it was cvEDS?
I would probably choose a L for the Vogmask. I have no idea how much 130 pounds is in Kilogramms, but I am rather tall so...
Alot of the hospitals here are dealing with a shortage i heard
The way medication costs in the US work is still shocking to me. Here in Aus we have something called the pharmaceutical benefits scheme, which approves meds for certain uses, and if you're prescribed them they don't cost more that $37.50, or $5.60 for people on the dole. Of course the system isn't perfect, eg my brother takes a med where the approved amount is 3 doses, so he ends up paying about $100 to get his script filled because it's for more, but it still seems so strange that drug companies can charge so much for things people need to survive.
+Ruby Q Interesting! I always like to hear how things are done overseas. I am really pretty lucky most of the time, I am usually mostly covered for my costs because of my insurance and the secondary insurance I gained with disability. But there are many things that are unfortunately not covered and many people who aren’t as lucky with their insurance or don’t have any at all.
Unfortunately all of my medications are private scripts, despite qualifying for PBS I still have to pay full price for my medications. That is one huge flaw of PBS for those of us with rare conditions who rely on private scripts to get by
Woah, in the UK we pay £8.60 per prescription no matter what it is, and anybody who has more than one medication to take will pay around £100 a year for as many medications as you need
True, I'm on a private script (though luckily it's only $20) and family members have been too
In Germany we pay 5€ per medication with a Maximum of 1000€ per year (i think). Even the Calcium I need to treat my hypoparathreoidis is covered after a letter from my physician (supplements are only covered to treat, not to prevent)..
Only off label uses are not always covered and basic things like low level pain killers and nasal spray.
The American system is TrueType weird and atrocious!
Do they make children’s vogmasks?
im irish and scottish
I'm 140 pounds and a medium fits me fine
when i trial a medication it i find it helps to start with 1/4 - 1/2 pill. you poor thing. I also react badly to quercetin. (MCAS here)
+Mandy Reynolds I used to do that a lot more. I still do it when I am worried about med side effects. But I have found over the years my body tend to react wether its a single crumb or the whole cake 😂 So I kind just went for it this time. I should definitely have done it more slowly, but I was impatient lol
I love your fingerless gloves💜 Those are cute! If my eyes would clear up, I might give that a try myself😉 I've managed a large blanket, a few scarves, hats and several odd pieces.
The world of chronic illnesses and pharmaceuticals is so warped and it's totally not fair to the people who rely on these meds and need to be on stuff long term!
As a crocheter (hooker 😜) I can safly say that your gloves look very well made. That's how all the cool patterns and stitches get made. Somebody gets bored with the same old stitch and wants something new.
+Applez Yo hahah oh why thank you! I may have to release a pattern of all the janky stitches I created to keep it together 😂
You should sell your gloves ‼️ I LOVE THESE
+Molly Golding Aww thanks! Ive actually been working on a few more trying to get my pattern right. So I may have a few to sell soon 😊
Christina Doherty I really like the second pair that you made, the thinner ones that can be used more often because they are not so bulky. I am suffering really bad with my fingers and toes. I’m so sorry that you are going through hell with your meds, I think that should be a put on the EDS symptoms list because I don’t know anyone who doesn’t have problems with it. I’m on opioids and it’s a nightmare.😢 Sending you gentle hugs from Wales 🏴 and looking forward to next weeks vlog. 💕💞💕xXx
I love leaving amazon packaging feedback and being like WAYY too big people
Are you sure it was the pills? I’m surprised you reacted that fast.
Could you benefit from using a mail-order pharmacy instead of CVS?
You would think they could give you a few months worth on some of your meds
why? Can you at least perform a prick-test or consume/inject very low doses of the drug/food you ingest, and slowly increase the dose?