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Vlogging with EDS: My Magic Glowing Mouth and Glasses Reveal | Week 72
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- Опубліковано 18 бер 2018
- What a crazy week! 22 hours in a car! I never want to SEE another car! That is, until PT Tuesday... But we did it guys! I am so glad that Im going to be home for a while. No more long trips (God willing) until May. Woot Woot!!!
Sorry last weeks video was a day late, sometimes it can't be helped. What did you think of the bonus storytime video? If you haven't checked out my story from my time in rehab you can do so here: • I Lost 3 Months of Mem...
Theremu CBD Products: theramu.com/co...
Theramu Soothe Bath Crystals: theramu.com/pr...
*PROMO CODE for 50% off: EDSLOVEU
My “Kuzco" Shirt: www.petotee.co...
Similar "Kuzco” Shirt: www.fifthsun.c...
My Dentist (Richmond VA): www.jntdental.com/
Our Matching Flannel Shirts: www.ae.com/wom...
The Frey Life: / thefreylife
Drawstring Backpack Bundle: store.thefreyl...
Carrie Hope Fletcher: / @carrie
“All That She Can See”: www.amazon.com...
My Glasses Frames:
“Near Glasses”: Zac Posen- “Leland” Style
“Far Glasses”: Coach- “Betty Style"
Where to find me:
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
My Etsy Shop: www.etsy.com/s...
My Redbubble: www.redbubble.c...
My Medical Facebook: www.facebook.c...
My Personal Facebook: / christina.doherty.315
My Twitter: C_...
My Email: Watercolormeimpressed@gmail.com
Lullabye (Sting) by Twin Musicom is licensed under a Creative Commons Attribution license (creativecommon...)
Artist: www.twinmusicom...
Circus Waltz - Silent Film Light by Kevin MacLeod is licensed under a Creative Commons Attribution license (creativecommon...)
Source: incompetech.com...
Artist: incompetech.com/
I am having similar issues to you right now with opioid medications! I recently moved cities and I am now about 3 hours away from where I used to live. So I have been having to re-establish care with all new doctors. I am on methadone for pain management and have been for the past almost 5 years or so. Finding a new doctor to prescribe it has been very hard. I see my primary care doctor every 2-4 weeks due to the nature of my conditions and last week we were discussing this issue (They have been trying to help me find a new pain doctor) and I said to the PA student I understand why doctors are so hesitant to prescribe opioids because of the opioid epidemic..... the PA student then said something that restored my faith in doctors and healthcare proffesionals, "Yeah but when people and patients like you actually need the medication it makes it nearly impossible to get and you all have not done anything wrong."
+Madison Its so hard! Im sorry. Ive been lucky thus far. But its so easy for me now to understand this epidemic as well. Its baffling how easily they put you on them and then how quickly you can become used to it. The reactions are so much more physical than I ever knew. And then, like you said, on the other side, the ones who really need it, the ones who are least able to fight, have to fight for every single pill. My dad and I were just talking about it and how its easier to get on the streets than it is from a doctor.
Opiate withdrawal is a NIGHTMARE - I'm really sorry you're going through it, remind yourself it WILL pass and take it a minute at a time if you have to. We're all here with you.
+InviDoll Thank you! Hopefully im nearly there! 💗
I don’t usually weep over videos but my heart broke when I saw how sad and angry and frustrated you were. But, we were both smiling by the end. You are one strong and resilient woman, I admire you so much.
+Lois Cassels Sorry for the emotional roller coaster 😂 But thank you for watching ❤️ You are very sweet!
Christina as a fellow avid reader, it brought tears to my eyes seen you tell the story of how you couldn't read for so long... Since books have been my ongoing comfort ever since I was diagnosed. I am so happy and thrilled for you.
+sayurimei Thank you! Its truly such a huge blessing! You better believe its been hard tp peel me away from books since 🤓
Christina Doherty I wouldn't blame you if your next vlogz are of you just comfortably cozy up in bed and reading. Or of you reciting out loud your favorite poem
Thanks for the in depth look at your mouth splints I've never seen anything like it before.
+Alice Ingham No problem! Im so glad that I had the models. It definitely would have been trickier to show em in action haha
Christina! I'm so glad you ripped that sticker off the package! I was thinking about putting a note in the packages that says " try to rip the sticker off and reuse it!" but then I thought that might be weird... so I'm really glad you figured it out :) Sending you a hug through your new backpack!
Kratom has totally helped me with overall body pain and prescription reduction. I find one to 1 1/2 g works for me. I find out in 25 days if I have EDS. I’ve been watching a lot of Dr. Diana’s UA-cam videos. Extremely informative. She is not only doctor, but a patient too!
I admire your strength in allowing yourself to be vulnerable (and posting it online) so much. Admitting that you’re having a hard time can be the hardest thing. You are so real and that is amazing. ❤️
Your strength and motivation is so incredible! I don’t know how you push through all this but you are awesome! Keep moving forward. We’re rooting for you!
+Alison Reynolds Thanks Alison! Like I always say, I do what I gotta do! There is no second option in my book 😘
I ABSOLUTELY ADORE YOUR MOMMA!!!! And your sister is so cute, y'all are a family that is just what all families should be..SO MUCH LOVE AND SUPPORT FOR ONE ANOTHER!!!!! It's not easy on a family with a chronically ill person, and your family is just yummy!!!
+disabilitydish Well thank you, ill tell them! The truth is that we are very very much imperfect. My sister and I have spent more years fighting than anything. Getting along has never been easy and our health issues have been the worst but best thing to happen to us. So, we are just doing our best and working through things one day at a time. 💜
Christina Doherty yea it's never easy, but the unconditional love shines through, and your very lucky...my sister doesn't care or believe my disablities, but she is a constant help with my son who has autoimmune hepititsis that's cause liver failure..so I'll take that..all families have issues but it's so nice to see how much they care and love you through all this and you them through it all as well..
YES ABOUT THE OPIOID CRISIS! It's so scary and so messed up. I've been so screwed over so much over this and it's not fair to our community. Sending so much love ❤
I saw The Greatest Showman 3 times in theaters (my friend works at the theater so i got in free) & i was listening to the soundtrack yesterday & got sad that ill never get to see it in theaters again because it was SUCH an experience. Musicals in theaters are just a way different experience.
+Megan Smithers Very true. Glad you got to take advantage of it im theaters. When the Les Mis movie was in theaters I saw it like 3 times. Much more of an “experience” than a dvd. (Hasn’t stopped me from watching the DVD like a million times though) lol
You seem so happy to have your new glasses and that you're able ot see so well wearing them. Both pairs look very nice on you and just so you know your round wire frame glasses are becoming very popular with young ladies these days. So they aren't only cute on you but also very trendy as well. I'm a retired optician and one thing you should get on your glasses next time you get new ones is the optional AR coating (anti-reflective) It will pretty much totally eliminate the glare and reflections you get on your glasses. The glare and reflections are not only annoying but it even tires your eyes out.
Your Mother is amazing. I'm a Mother too so I know she wld do anything and everything for her children. You're a pretty awesome daughter to have as well, so you both are lucky to have each other. Paired nicely, me thinks! Oh, and your sister seems pretty cool too. My sister is not so nice. Glad you have a sis with a sense of humor... and that doesn't mind sharing a Mom... My sis never caught on to the concept... *sigh* My Mom passed away 3 months ago. But she was elderly, sick, and now, God willing she's in a new body in Heaven. I'm actually very certian she is. Anyway, y'all enjoy each other as often as possible. Again, I see it in the comments often and it's true... Your Mom rocks. Mine was tops too. 🙂💜
I Love your Momma ♥️ ! Keep being real with us Christina !
+Tracy Lustick Shes definitely the real MVP! And I certainly plan on it! 💗
Christina, I'm glad to hear I'm not the only one that is like "sleeping Christina". I'm finally breaking down and getting new TMJ splints.
You are an amazing human being, we should not complaint about stupid little things that bother us when they are people like you that endure so much and take it like a champ! Hope you get better one day, God and the Universe bless you girl! ✌️💕😇💗💝🙏🏼😊
External hard drive to help you with your videos. I’ve heard withdrawals are terrible, just be careful and don’t rush the process. I can’t believe they didn’t give you a taper schedule.
+Holly Wittenberg I have one actually! I just need to figure it out. Im having some weird issues where I can’t delete or add things to it. I think its somehow locked from when Backed up my old laptop on it. So I just have some troubleshooting to do
HUGS. It is OK to have bad times. We are only human and God gave us emotions for a reason. Cry when you need to, its a pressure release. Praying for you!
+Dawn Laughlin Thanks Dawn! How are you doing? 🦓💜
Hey Christina! Thanks for asking....you know how it goes, something new every day. Tons of tests to set up for Eagle Syndrome and foot issues. HUGS
You don't have to be sorry. Your awesome and that's why you have this channel cause your chronic illness. I'll keep you in my prayers. Your glasses I love them both you look very nice in them.
Like Your glasses the wire ones look pretty on You that's cool that one of Your mouth splints glow praying that Your pain gets less that's great Your reading glasses work for You and now You can read You're an inspiration and a really sweet person God Bless
+Paula Castle Thank you very much Paula! 💗
I love the Frey Life too! I always see your comments on there😂
+Samantha Jester They are amazing! Gotta love Peter and Mary (and Ollie 🐕 of course)
So beautiful with such an endearing and lovely disposition and personality.
Your reading glasses are so cute! Beautiful soul, beautiful lady
Dear Christina,I just want to wish you and your family all the best,I never heard of EDS until I watch your Vblog hope you feel better
I love your glasses. I love your videos. I love your beautiful smile. It helps keep the tears from falling.
+Christopher Youse 💜💜💜💜 Hang in there Chris! 💜💜💜💜
youre skin is so clear!!
I love your channel so much! I have EDS too, it’s so refreshing to see another person who’s life is affected but the Syndrome so much (even though I wouldn’t wish that on anyone). I’m so used to EDS being treated like a fun condition that makes you a contortionist and have party tricks, it’s so much more than that. We have some similar symptoms and some really different ones, so it’s interesting to see!
Sending you healing hugs from Australia xxx
+Blithe Dream I definitely agree that there isn’t enough representation of the spectrum of EDS out there. Even to most doctors EDS means very little outside of party tricks. Its always been my goal to try to show the effects on the entire body and not just joint stuff 💕
You are truly a inspiration.I to have a lot of medical body problems and pain.Live is so not fair but I guess it's what you do and how you handle it being positive and a strong women you got this girl I wish you the best♡:)
Lauren reminds me of my little sister so much! Y'alls relationship is great
+Alex B Haha oh sisters! Our relationship is definitely special. We fought like cats and dogs growing up but we are luckily a bit closer now. We always rolled our eyes when people told us we would get closer when we got older. But they were right 😊
Christina Doherty Ha! That's exactly what happened with us! Always getting onto eachother to best friends.
The really hard part is that as soon as you get off of them...you get to have a really painful surgery and be put back on them...only to go through the same struggle to taper back off. 😒😩😢
Please know that being emotional is part of the taper... it’s part of what of the drug is doing to your body and psyche...
+Bumpy Back Roads Ugh, don’t I know it! Knee surgery is on Wednesday and Im going to ask to try it with just a nerve block... but Im not sure I will be able to take it. No idea what to expect and I my neck can’t risk the dystonia/ seizing I end up with if I reach too much pain.
Ah I love the glow in the dark splint!
Thank you so much for this video... I have Eds and some other issues and I’m gonna raise some stuff with my dentist now....
Glad to be updated on you. I love reading and it helps me in so many ways. Happy you can read again. Xoxo
+Lori Newcomb Thank you so much!
A ten hour car journey is so grueling, the splints look great, I think those would be so useful, how do you clean your jaw splints? Mine are looking grubby. I think you do amazing to keep a good spirit, EDS is horrible, it throws one problem after another. (I'm a fellow zebra). Also, I'm suffering double vision too, no idea on the cause. I wish you the best of luck on your following surgeries
+Arabella De Cadenet I just brush them 2 or 3 times a day when I brush my teeth and put em in polydent once a week. I think that the fact that I don’t eat or drink anything besides water helps. Theres nothing to stain them. I have friends who drink coffee with them and the clear doesn’t quite stay clear lol
ahhh., that probably definitely helps, thank you :)
It is really upsetting. Im on opiate treatment for heroin addiction, taking methadone and the smaller dose you are on the less its suggested to taper. So I started on 60mg and am now on 25mg, the first few months i was dropping 5-10mg at a time but now i am only on 25mg i am literally dropping 1-3mg every other week IF THAT. It is a strong drug and needs to be done really slowly to not go through withdrawals. Im super upset there isnt a system in place to avoid this drama for you and i completely understand your frustration. I hope that people dont judge me for being open about my addictions as I believe my addiction came from a place of suffering and i am now working on my mind in a way i havent before! I wish for you the best you are genuinely a beautiful soul x
+earthandfire I am so glad you are being open. I think it’s something that needs to be talked about. They had me on a huge dose and I have no refills. That is why I have had to cut so quickly and go through withdrawals everyday. I have only a few days left now. Its been awful and its made me understand why we are in such a crisis. I never understood addiction until now. Its not something that you just fight with your mind. I admire your strength as you continue to taper. Im very sure it isn’t easy 💜💪 You got this!
Christina Doherty that is so sweet thank you so much for not judging me negatively its something i dont like opening up about much due to social stigma! Much love and blessings to you xxxxx
Thank you for showing the not-so-great side of EDS (and any chronic pain disease/disorder)...it’s so hard to feel so badly like you cannot physically do something but you still do/have to. Wishing you tons of luck with those stupid withdrawals...I’ve experienced them after a spine surgery, they are horrible but don’t last forever. Stay strong girly.
+JaimeStylez Thanks love! Ugh, I know! These meds are far worse than surgery. But im almost through! ❤️💪
love your new glasses! They remind me a bit of the fantastic beast era but i think they're totally coming back btw. Was looking at the website for my eye-specialist and saw similar models. And i love how you're being real with us, it can be hard sometimes and we've all been there i think. Keep your head up, you got this
+Celeste van Veenen Thank you! If you want to know the model Its below the video 😊 I try to be as honest as possible. I never really expected to be so open, but it wouldn’t do anyone any good for me to only show my happy perky moments. I hope to raise awareness of all of the sides of the condition
The Greatest Show on Earth is amazing and I’m sure it’ll be out soon on Blue Ray! You’ll love it! It’s a great movie :)
The Greatest Showman***
+Lauren Allison ❤️
Bless you sweet heart, you go through so much. Also your going through the after mass of anaesthetic that takes a while to get out of your body. Hugs to you all xxxx
+Poppy Chocky So true! They are not friendly in our systems! 😣
Tough times for you Christina, I hope things improve for you and fast. The opioid crisis is happening in Australia too so many EDS + people I know are suffering through it through no fault of their own. I agree that Dr's throw all these drugs at people to get them over certain pain crises with no
thought of the after effects. What happens when the "grace period" is over but the pain persists or doesn't completely die down, which lets face it happens to Zebra all the time. I don't know but should Dr's especially pain Dr's be trying harder to try other meds and combinations to keep us ticking
along. In my estimations we deserve better.
Your an amazing human being ♥️
+Cat blep Well thank you so very much! 😊
The combination of your new glasses and that black turtleneck are basically top style in Berlin at the moment. Although you don't live here, just know you look really cool on the otherside of the world:)
+Emily Horton Oh awesome! Im glad to be in tough with my German routes 😊 Glad to know if I come over Ill be high style!
You have been through so so so much in the last few weeks. All of the traveling alone would make me crumble. Hotels are always hard on my MCAS. You are so resilient, and sometimes just letting yourself cry for a bit really really helps.
I agree about the meds. There should be a built in taper. Maybe you can request it from the beginning next time?
I LOVE YOUR GLOW IN THE DARK BITE SPLINTS!
And I'm so thrilled to hear that you can read again! It's been 5 years since I've been able to read an entire book because of intense brain fog. I'm going to try again now that I've had some med changes. I really miss reading so much!
+Chronicles of a Broken Person Oh Im definitely leaving with a schedule next time! Haha I guess I should have thought to do it from the beginning. But the doctor gave me poor advice.
I was just thinking i would love to see your vlog and here it is !
+Jenny Skulldoll 💜💜💜💜
You should not suffer or go through this God bless you 😍❤
If it makes you feel any better I'm here four months after you and I still havent watched the greatest showman.
In the thumbnail, I thought you dyed your hair blonde and I was like OMG YOU LOOK AMAZING! You'd look beautiful as a blonde lol
+Amanda Hernandez Hahaha oh gosh! It would fall out of my head! Ive lost a lot of hair in the last couple years from meds and malnutrition. For now, Im just aiming for healthy 😂 But ill keep it in mind for the future.
I loved Jane Eyre, Little Women and stories such as that. Eugenia Price is one of my favorite authors. I am 68 yrs old so you might not like these but reading is magical to me. Love and prayers
Yes i just re aliggned my bite and glasses tooooo. Yes my surgery screwed up my jaw as well. I am sorry u suffer as well. Keep on fighting
I was on oxycodone 8 pills a day for 3-4 years. I went off them with the help of buporphenorphine patches. Still an extremely rough 20 days.
+Luke Petersen I can only imagine! Thats a difficult detox! Glad the patches helped. Unfortunately Im allergic to them
ooh you're reading carrie's book!! i have her first book, but haven't read her second. cool!!
So sorry you are struggling with withdrawal on top of everything else you face. Very similar situation on moraphine/trying to get off and my saving grace is that I have palliative care. Don't know if that's something you could try, while it's usually through a hospice provider the goals are somewhat different. The several that I have had over the years have all been very compassionate and their goal is for me to have the best life possible. When I was dropped by pain management with no plan in place my Palliative NP took over and is working very closely with me to take me down slowly and safely on the moraphine. They've also been great when I find myself without a Dr or have an urgent matter not being addressed in a timely fashion, sometimes prescribing or coordinating care or speaking to a specialist on my behalf. Probably the biggest help is that they do home visits and spend whatever time necessary to address ALL of what is bothering me during that visit, spent 3 hrs with me last time. I hope this week is better for you and you're able to finally get some rest!
+Amber Yingling Im sorry you are in this situation, but Im so so glad that it sounds like you have such an amazing palliative care team. I know that can make all the difference. I don’t think that really applies to my situation right now, but its good to know that is an option. Wishing you all the best! ❤️
Get well soon
+Telekinesis.TK Thank you! 💜
Soft hugs to you, Christina:)
+Jessica B ❤️ And you!
As for glasses i cried when i was given proper glasses.i actually feel my brain working differently
awww I'm sorry about your bath! I'm amazed though by your positivity and your gorgeous smile🌼
+Marie Laveau Thank you! 😊
I love you Christina! I’m so glad you can see now!! Thanks for always being the best part of my Monday💜
+Lorena Gomez Aww thanks! Thank you for watching! 😘
Thank you! - when I had a breast lump removed they sent me home with 20 vicadin... I wasn't even in pain. Or at least nothing compared to what I live with with Chiari. I didn't use it.
It's so irresponsible of them to do that!
I love your new glasses! 👓💜👓 Dont worry if they’re in style or not. Be you and choose what makes you happy 😃 I’m glad you were able to read a book again. I got new glasses for computer/piano distance but have not been able o use them because my eyes don’t focus together in them, and it’s hard to see things well and in focus with my regular glasses. Oh, well, Audible has a pretty good selection and I am training myself to listen instead of visually reading. 🐾💖🐾💖🐾
Those glasses are totally in style! They look really nice! I have a nice joke for who ever looks through these comments:
A polar bear walks into a bar and tells the bartender, “Give me a gin and….............. tonic.”
“Why the long pause?” asks the bartender.
“I don’t know,” says the bear. “I was born with them.”
+Ethan Twiq Bahahaha 😂 Love it! Thanks for spicing up my comments! And thanks about the glasses 🤓 I like em too!
i really really like those librarian glasses!!
+Huu Tiainen Thanks! Haha I do too. And of course I especially love the benefits! 😊👓
Congratulations on the reading! I'm so delighted for you! I've been in a similar situation (lived for books before EDS put me through the ringer) and got back into reading last year after years of being too ill to do so as well, so I'm over the moon that you've been able to return to it too! I hope many great stories await you, and I look forward to hearing all about what you make of them. :)
+curiouscatalyst Thank you! Wahoo for reading!!! Now I just have to remember to put. The. Book. Down. Every once in a while! Nothing more dangerous than a good book 😂
I know I'm just a stranger on the internet but I've followed your channel for about a year now and I wanted to tell you that I'm thinking of you. I hear your pain hun, I can't do anything but send my love all the way from South Carolina.
+Hannah Rodgers Aw, well thanks Hannah! Thats more than enough ❤️ I think of all you guys as my friends that I just haven’t met yet haha. I mean, you guys practically know everything about me 😂
I’m sorry u had a rocky start to ur week but all’s well that ends well! Thank u for inspiring me to keep fighting and overcoming EDS!
+Celiac Zebra Thank you for following my story! 💗
To lessen the reflection in glasses one usually tilt the head down a little bit. I know you can't do that but maybe just tilt your glasses or change the camera angle a little if you want to get rid of it. I don't mind it though.
Also, you look really cute in your new glasses. Especially the wire ones.
Much love ❤
/Linda
+Linda-Marie Hamrin GREAT TIP! Thank you! Im trying to hold the camera higher. Im getting a good arm workout 😊
Christina Doherty I'd rather have reflection in your glasses than you having a painful arm. ❤
How do you manage to smile? With pain you are very strong and beautiful 😍❤🐰
Your mom is so beautiful! I know your finger splints are functional but they look so cool too! Is it emotionally difficult to have your spine fused? Does your brain get used to not trying to move your head or slouch? You are so strong and it helps me so much to see your vlogs. I'm dealing with stuff too but nothing like you are. You're an inspiration to me. Thank you for making vlogs and sharing your life. It makes a difference.
+purr bugaloo Awww I will tell her! Umm well the fusion is kinda something that I am continually coming to terms with. I was never afraid to lose motion going into surgery. It was just a matter of “getting my life back.” So now that I am living that life again im discovering my new limitations and how to get around them. But for the most part I just feel incredibly lucky. I do feel a pang here and there though knowing I can’t swim normally, go on amusement park rides, look taller people in the eyes, and eventually tilting my head to kiss someone special. But the positives well outweigh the negatives. I often feel like I can do MORE. One annoying thing though is that my shoulder motion is greatly reduced and I have no twisting motion. So I cant really reach very far at all in any direction . Its the things you don’t expect I guess that really get you. And yes! I 100% “move” my head all the time. I don’t remember really that I can’t. I can still send those signals and activate those muscles. To me it feels like Im moving it. But nothing happens. 💜
i don;t know if able to take by antihistamines will help some with withdrawls i really know how it feels and there is nothing that can really express how it is but the tramadol and valium should stop the withdraws or keep you from feeling bad but if you don't take what your meant to you will after a day withdrawal from those 2 so keep to your reg dose of them 2 keep strong you are beautiful inside and out sending good thoughts and hugs from britain xxxxx
+Lisaa I take Zyrtec already and ketotifen plus cromlyn sodium and Benadryl as needed. 💜
Hey Christina! I know you are struggling emotionally lately and I really recommend seeing a therapist. I think it would be helpful even if this is a momentary thing, cause it really helps me and therapy can really help you to cope with things. I hope things get better
+Amber T Thank you! I appreciate it. It’s something that we plan on doing, Honestly We literally have no time right now. I can’t drive so we are looking into possible skype appointments. I have tried talk therapy before and it didn’t really help. I did really like the ones who taught practical coping skills though. Luckily I have my mom as my person to talk things out with for now until we can find someone more reserved from the situation. 💕 Thank you for caring about my mental health!
Born in Richmond
Haha I don't know if you know of the musical "the great comet", but the round glasses with the yellow sweater reminded me of Pierre!
+Amy Lynn OMG YES!!!
I feel for you so much, I really hope things get better, I’m taping from klonopin, your in titled to be mad and frustrated 😜
+Erin'sx World Ugh! That must be rough! I took one dose years ago and it was STRONG! Best of luck! We got this! 💪
When you got emotional, I just wanted to reach through the screen and hug you! Then dip you in cbd cream😄 You mentioned your stomach swelling and pushing against your ribs...I had an AH-HA! moment. Then I wished I could share my primary care doc with you. Wanna drive to Texas?? I'm his first EDS patient, but he's getting another soon😉
+Chronic Butterfly hahaha Im game for a Texas trip! And thank you, you are very sweet. 💕 I hope you can help your doctor to understand your needs. Our anatomies are quite unusual
Christina Doherty You got that right! We're in the midst of figuring out what's causing my digestive issues AND the hyperlipidemia. My GI can't get me in until the end of next month, so, eating is hit or miss... mostly miss.
Say what! You were in Richmond! Next time you are in town give me a heads up here or on FB or messenger and we can maybe get together for a little while! Our apartment is such a little shoe box but your welcomed to stay with us next time but forewarning ya our place is very tiny... but if you need some more room I may be able to find you a place to stay at one of my friends house! I completely get the teeth crowding thing and splinting been there done that.... I actually had to have several teeth pulled just to make room for the teeth I now have! Will you ever need to have the cushioning replaced in your jaw? One of my friends had to do that and while it is a process it worked out awesome! The dentist/dr she saw I believe was in Maryland. Lol the glowing mouth! Your mom is such a champ with all the driving and medical visits!
+Nettie Clouse I will definitely be back! This time I literally just slept anyway haha 💜 Im not sure what my future will hold. We are doing absolutely all we can to avoid jaw surgery. Its not really something that is a great option for eds patients. But we will cross that bridge when we get there.
Yep I completely understand and get the whole eds thing... I have to get mine adjusted as a norm as of late now... Always praying for ya!
Your bite isn't as bad as mine, I think my mouth before I got an expander was the definition of a high and narrow palate, now i have to get jaw surgery for my overbite, to bring my bottom jaw forward and place some cadaver bone in to make the jaw bigger, and braces to bring some of my bottom teeth that at tilting in from my misaligned bite, back to where they belong.
Call Maintenance
Oh Honey.........I'm so sorry, but you're suffering from Post-Acute-Withdrawal Syndrome (PAWS).
Just keep tapering........You'll get over the fatigue and emotional roller coaster. We're all here for ya!!!!
Love ....Moe
+stump Hey Moe! Ugh yeah, Its kicking my butt lol. I did google it though and its nice to know that there may be a name for the reason its affecting me so much. Ive done this a dozen or so times and have never had such a bad time with this before
I love the matching shirts!
+Kristin Dewe Thanks! I got mine and as soon as she felt it we went right back online to order another 😊 We are twinning like everyday now
I LOVE your new glasses on you!!
+Carmi Reimer Thank you Carmi! 🤓
Thank you for sharing your journey!!! Stay strong!!! 💕xxx
+Helsbeth Loves Im planning on it!💪 Thank you for following my journey! 💗
Christina Doherty I do not have eds but have a friend that have!! I do have chronic health issues. Which is not to bad at the moment. Xx
I’m sorry you had a tough week honey, but I love your glasses and yes you are a very cute elpheba xx
+Miss Adventure hahaha why Thank you! 🤓
Stay strong ❤️
+Jess Fleming Thank you Jess! 💪💗
You have a PhD in EDS!
+Cheryl Coderre 😂 If only!
I love your new glasses, especially the wire framed ones! Do you have a GoodReads account?
+Darla Yes I do! Ill try to remember to link it under my next video, I could really use some books suggestions. 😉
sweetheart, have you maybe considered seeing a sleep doctor or a psychiatrist to put you on some regular sleeping medications. Normally, I don't encourage adding meds but I know I have to see one to get any sleep at all. If this has gone on for more than 2 weeks then you at least need to talk to your primary about sleep meds. I know you were looking for a new pcp last video. There is no shame in being emotional especially for what you have been through. Its "medical trauma" and you can get ptsd from all the stuff you been through. Consider talking to someone about sleep meds and maybe a trauma therapist (and yes I have one) that would be able to help you through the hard times on a professional level. it was the best decision i ever made.
+Ebony Marie I actually have a sleep doctor. Ill be doing my 5th sleep study sometime after my upcoming knee surgery. For now I take remeron/mirtazapine for sleep. It definitely helps.
Wow I’m so dramatic
+Lauren Doherty So extra! 😂 You’re welcome for leaving you in
Lol, you looked cute. Sassy drama cute. Workin it... Workin the camera.. lol.
has your mum had her hair done looks different
Next time stuff a washcloth in the tub draiin
+Teresa Taylor hahaha It was such a weird plug, It had this metal stopper that was attached and you just pushed it down but it wouldn’t go down. The plastic cup was the only thing that fit in the small gap 😂
I know that some medication can take us to dark places in the mind. Sometimes it can try to affect your spirit. God knows where you are.
+Richard Thompson Thanks Richard! Its only temporary. Im almost through! ❤️
Is it completely out of the question for you to live in the area where your surgeon and dentist are instead of having to travel so far so often? Do you get some kind of SSDI to pay for housing and a care nurse of some kind?
+Angie Resor Hey! So unfortunately, no matter what, Im going to have to travel. I have doctors in Massachusetts, New York, Rhode Island, Virginia, Pennsylvania and Maryland. Its just part of having a rare condition that need very specific specialists. Right now I spend a lot of time in the south for my current issues, but I would need to make the opposite trip often if I did make the move. My Dad has a good job here and my sister attends school here. Also both my parents have aging parents here. So right now this is the best option for our family. But I would love to rethink my living situation someday when Im able to be more independent. I do receive disability payments, but I would never be able to pay rent anywhere with it. Not even with roommates. Ill have to wait on the disability housing list. Luckily my insurance does currently cover my home nurse visits once a week here to help me with port care. But I doubt I qualify for anything more. 💕
Christina Doherty I wish the best for you. I'm glad you have a lot of great support. You are truly inspiring!
You make a cute Alphaba...
Consider a Suboxone Psychiatrist. it will help with pain and its used for people that have been dependent on opiates. I am telling you this out of love honey. I had to do it.
❤️🦓
+Jenn G 💜
Ƹ̵̡Ӝ̵̨̄Ʒ ❤Ƹ̵̡Ӝ̵̨̄Ʒ ❤Ƹ̵̡Ӝ̵̨̄Ʒ ❤
+Willo Withywindle ❤️
who disliked this?!?!?!
So you did nothing for st. Paddy's day?
A lot of the info they are spewing about this opiod crisis is not accurate. Most of these deaths are caused by people using street drugs (heroin laced with illegally smuggled fentanyl), and then mixing those with illegal purchases of benzodiazepines and alcohol. Only about 3,500 people per year die just from using prescription opiod pain medication with some being suicide, and others accidental. I've lived with constant pain for 36 years and have never had a doctor just throw pain medication at me. I spent the first 12 years of constant pain using otc medications and non medication methods to control pain. You name it, I've done it from massage to physical therapy to accupuncture and more. When I ended up with a permanent fracture in my pelvis on top of the issues with my lumbar spine and nerve damage, I had no choice but to take pain medication.
Addiction levels have remained pretty much the same since 1920 (0.5%, same as in UK, Canda, and Puortugal and same since 1920). If we were causing excess addiction with prescription medication, why hasn't the number of addicts gone up? Acetyl Fentanyl is causing this epidemic and this is not a prescribed medication, it is an illegal synthetic version that is smuggled into the country with aother illegal drugs.
www.ncbi.nlm.nih.gov/pmc/articles/PMC5640434/
How the DEA Changed the Overdose Numbers: www.painnewsnetwork.org/stories/2017/10/23/how-the-dea-keeps-changing-the-overdose-numbers
Only 1 to 3% of chronic pain patients become addicted to their medication. Addiction is not the same as physical dependency. According to the National Institute on Drug Abuse, only 4% (depending on which study you read) of people who take prescription pain medications step up to heroin.
Study shows that most people who take painkillers illegally are getting them from friends, theft, or dealers, not from doctors. Doctors are not responsible for this "epidemic". healthland.time.com/2011/06/20/study-most-addicts-get-painkillers-from-friends-or-family-not-doctors/
The Myth that Prescriptions Cauesd the Opiod Crisis: www.newsobserver.com/opinion/op-ed/article145348794.html
Opiod Epidemic 6 Charts Designed to Deceive You
www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935
The Other Side of Opiods: www.coasttocoastam.com/show/2017/11/26
Some states, to increase the number of deaths to support this hysteria, are counting terminally ill patients who die while taking pain killers as opiod induced deaths. (reported in Tampa Bay Times newspaper). They are also counting anyone who dies with an opiate in thier system, even if the amount in their blood is not high enough to be an overdose. They are also counting anyone who dies in a place where a pain medication is, for example if someone were to have a heart attack and die in my living room they will be counted as an opiod induced death because there is pain medication is my house even if they have none in their system. These are the methods they are using to pad the numbers of deaths. More people die from tylenol and nsaids per year than prescription opiods.
This hysteria is causing increases in suicide numbers, especially among veterans but the news refuses to report on it. medium.com/@ThomasKlineMD/suicides-associated-with-non-consented-opioid-pain-medication-reductions-356b4ef7e02a
+ravenshad Wow! Thank you so much for putting this together for me! Im blown away the time and effort you put into your response! I will be checking out the links before. I was definitely talking more about the ones who are living stuck on the meds than the ones that die from them, so its very interesting to see this data laid out. Our town has been really ravished and dedicated by these street drugs in the last few years so I think I came at it with a bias already in one direction. Awesome to have more facts. Thanks again!
You're welcome. This only took me a few minutes to put together as I have a lot of links. I live in FL. We were either the 2nd or 3rd state to have these lies being reported. It resulted in laws being changed in 2010 and the DEA scaring doctors and pharmacists about prescriptions which resulted in hundreds of patients losing proper care, even the terminally ill. There is a lot of information out there.
I understand believing the reports because they make it sound like hundreds of thousands of people are dying per year. Here in Florida back in 2009/2010, they were reporting 7 deaths per day. But when the sstatewide pathologist's report came out in 2011 for the year 2010, the number of deaths with opiods in their system did not come close to 7 deaths per day. Of course, this was not reported. Nor was it reported that the vast majority who died had 2 or more substances in their systems (opiod [mostly heroin], benzo [mostly xanax] and alcohol most common mixture) and we have no way of saying for sure which of the 3 (or more) substances caused the death. It could have been any combination of the three. The news reported that oxycodone was the number 1 killer for that year, yet the pathology report (for entire state) showed Xanax was the number 1 killer for the year as it had more deaths than oxycodone did, but again this was not reported. Even now they still report the false information.
A couple years ago MA hired a company to go over the information about these overdoses within the state to see if it was a result of doctors. What they found was that the vast majority of those who died did not have a prescription for pain medication from any doctor in the entire year before they died. I think it was somewhere around 80%. This means that these people got the drugs illegally, not from doctors. But, that wasn't widely reported either. (I used to live in Medford, MA [a bit north of Boston], so I keep an eye on the state in case I move back LOL)
Sadly they are making things so much harder for those of us who are chronically ill and living with constant pain. Research is showing that constant pain causes a lot of damage to the body resulting in particular conditions developing as a result (blood pressure, heart issues, seizures, and more), whereas if the pain is adequately and aggressively treated these extra conditions do not occur with the same frequency or severity. For example, people with chronic pain lose 20% of the gray matter in their brains after 20 years. The amount lessens if their pain is aggressively treated and kept at lower levels. It makes sense since the body dumps all kinds of chemicals and hormones in response to pain and these are not meant to be constantly present at high levels in the body. Such changes can cause things like depression, anxiety, blood pressure, thyroid issues and more.
OK I'll stop babbling now. I hope you are feeling better. I'm still a video behind and am about to watch your newest one (titled awake during surgery). I love your vlogs and I keep you and your family in my thoughts and prayers. You are a very strong person with a great attitude.
You're beautiful
+Alice Ingham Thank you Alice! 💕
You're welcome :)
First!!!
+Mackenzie Powell 😘❤️❤️❤️