Vlogging with EDS: Family Frustration and My New Pain Doctor | Week 75
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- čas přidán 8. 04. 2018
- * I APOLOGIZE FOR ALL OF THE EDITING ERRORS IN THIS VLOG. I HAD A LOT OF TROUBLE WITH CORRUPTING FILES AND ULTIMATELY LOST THE INTRO AS WELL AS SOME CAPTIONS. AND YES, I ACCIDENTALLY PUT MARCH IN PLACE OF APRIL. THAT ONE WAS JUST A GOOF. OOPS!*
Hey guys! Sorry it wasn’t exactly the most interesting week of vlogging. It just wasn’t a very interesting week in general. But I’m slowly and steadily healing and can’t wait to be up and moving again! I hope you all had a good week! This week I have been watching a lot of vlogs (to keep me sane) and I have been binge watching Gem’s videos on her channel / @wheelsnoheels . She is so super sweet and her videos have helped me SO much since I am still adapting to life as a full-time wheelchair user.
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Don't you dare, for one second, feel guilty for getting proper medical treatment! YOU my dear, ARE blessed! You're blessed to live in an area where you're closer to these specialists. Time and loud mouths like ALL us zebras, will get the word out that we NEED more specials, we NEED more primary care doctors who GET us. We just have to be loud.
Sorry for the family drama. You are right, no family is perfect and even the people who love you tons just can’t be supportive 100% of the time. But hopefully once you are well enough to be back in your own room, things will be less stressful.
Yes!!! Yarn is so expensive! It's unfortunate because I'm a crochet addict! Hugs to you from Wisconsin, girlie! I was so happy to see your vlog pop up. Stay strong sweetie. I can only imagine your struggle. My chronic illness isn't the same. But I understand the meaning of struggling! Hope this coming week brings more relief, new solutions, more family adaptation, a lots of happy moments! 💜❤💛
I'm so glad the package brightened your day! I've been praying for you. I had 3 knee surgeries before I was 12 years old, and another when I was 23. It's not easy, but I know it will help you so much.
Thank you for sharing about your family dynamics following this surgery. My mom flew out to help with my jaw surgery recovery. I couldn't have done it without her. She will be here for 2 more weeks (surgery was 2 weeks ago). It definitely changes or home environment, especially with me trying not to scare my kids because of what I went through. Living with people like us isn't easy, but it's how you handle it that counts. It sounds like your family is processing everything and working toward becoming a better team. That's wonderful!
I hope you have an amazing and blessed day! 😄💖
The Ehlers danlos society now have EDS ECHO. As an EDS patient myself it's up to us to spread the word that all doctors can learn from general practitioners to specialists. Never feel guilty that you are receiving the best care you can. Yes there are others not so fortunate but your videos alone are spreading awareness which I hope other healthcare professionals are watching. I miss seeing you on here. If it wasn't for you I wouldn't be diagnosed. But I pop back to watch you from time to time just to remind myself of the positivity you displayed even in your toughest moments. You should never feel bad about not posting however, as you chose to share with us some of your most vulnerable moments. You suffered so much medical PTSD and though I miss you, I still watch you as though you are still posting. Sending all my love, prayers and best wishes and hope your family are all doing well. Much love. Xxx
Has anyone ever told you, you remind them of Snow White minus the seven Dwarfs? You have that naturally beautiful and smiley face with a very fair skin completion.
Traveling with a spine injury/issue is- at least for me- excruciating.Its hard for people to understand if they haven't experienced it ( which is expected and fine) Some people think "but you were just reclining in a seat.." Oh, if they only knew the pain the human body can be in. I'm glad they don't- but I wish people would understand that their reality is not "our" reality.
lulu nordahl neck is the worst for me, even a bump can make me feel sick
i am right there with you. i once heard someone say “you want to find your passion? think of the things that really, REALLY break your heart. the things that piss you off. the things that rattle you to the core. THAT is your passion.”
i have had my fair share of shit-tastic doctors. all of them local. today i met with my new primary care physician and she spent 45+ minutes with me just listening to my story. by the end of the appointment i was almost in tears just because she was listening and actually HEARING me... not accusing me of being a pill seeker. not accusing me of being mentally ill. or accusing me of it all being in my head. she heard me and she saw me for me and my illnesses for what they are.
we have got to find a way to make our healthcare system better than it is.
Hun, you know you can have a CNA from home health come out more often to help you bathe and help you get around. Have you expressed your family concerns to your home health nurse? This is why I asked about going to rehab, but you know what's best for you. I am praying for you and I hope you and your family have some relief soon.
Thank you so so much for your transparency and honesty about your healing and feelings etc. It’s really inspirational and just helpful. Thank you so much.
And the vests are gorgeous!
Great video per usual! Your doctor sounds completly great and I'm so glad you were able to get in to him! Thank you for keeping family life real - there truly are ups and downs to it all! You really are rocking this recovery especially since it was a double wamy! Really appreciate you! Keep it up sweet friend!
+Nettie Clouse Thank you! I definitely think talking about family is important. When there is someone in the house with any kind of special needs it really affects everyone. And its bound to cause stress and friction sometimes. Thats just how it goes and there is no use pretending it doesn’t happen 💗
So excited for that new video to come! Hoping the best for you!!
I guessed it was Dr Chopra, not surprised its 5yrs as he sounds amazing for EDS & CRPS (son has CRPS added to our EDS) but we're in UK. Soo glad you see him hun X
Hope your doing better my dear. I know the family thing, even though its usually just my hubby and i dealing with things, it still gets frustrating. I hope you heal fast and well. Sending positive and loving healing energy your way. 🦓🐘💜
Considering how much you have been going through recently!!! I think you are doing amazing!! You all will get through it!!! Xxx keep strong!! Xxx
5 hours for an appointment....holy moly!!
They're crochet threads for things like doily's, jewelry, filet crochet (makes pictures/words), and more. Size 10 is the average, used most commonly for bedspreads, table cloths and more. The thinner threads can be used to make lace collars and trims. They use the really tiny crochet hooks. With how great you are using yarn for things, I am sure you can do lots of stuff with the crochet thread too :)
Your so beautiful ❤ so inspiring and strong love watching you I miss seeing you on CZcams. I really wish you a pain free day
I’m so excited you went to see Chopra and were so happy with him! I’m going to see him the end of July and hopefully he helps me as well 👍🏼 hugs and prayers from Tennessee ♥️
You are so amazing. You made me laugh with your “claw” clacking away😀. Rest and keep on healing. You and your family are doing a fantastic job!
Oh Christia, I’m so sorry you’re having a hard time. Glad to see you had some help. We actually have the same pain doc! I too have a 8 page list from him. Love him! Great to hear you agree. I also have a concierge primary care and I HIGHLY recommend it. I am so sad/anxious today due to my increased pain and likely tethered cord surgery. I knew seeing you recover would help me feel less scared. I’m especially worried about being at home and the family dynamic and traveling to RI for PT. Looking into inpatient but worried even Spaulding won’t be great with my MCAS/POTS/gastroparesis diet. So grateful for you! Feeling much less alone. 💕💕💕
I think you've inspired me to start crocheting again.. :) hope you're recovering fast!
Your new pain Dr sounds amazing, glad you found some one like that to have on your team. Sounds like an invaluable resource for someone with EDS, there tend to be so many things that all need to be taken care off.
While I hate to hear you are dealing with family drama, I am so grateful to hear that I'm not the only one. I also have EDS and have had dozens of surgeries. And dealing with extreme allergic reactions. It's hard to explain how difficult it is to live with EDS, so I love watching your vlogs to know I'm not alone in the struggle. One of the hardest things for me to deal with is seeing my family so upset and worried about me-- it sucks to know I'm the reason they are stressed, and I can't fix it! Anyway, thanks for sharing your story. I really appreciate knowing someone else understands.
+Sarah Hargis Of course! I think that’s something that needs to be talked about more. Having a loved one with a chronic illness is hard, whether its a friend, family member, spouse, etc. it really affects everyone. And I think theres a lot of pressure to look like your family has it all together when, in reality, nobody does. And I think thats really isolating for them because they aren’t getting the support they need either. Its understandable and inevitable to have stress and friction there. And thats okay ❤️
Oh my gosh, Im on my maternity pillow as I type this. I have the exact same one and it's worth every penny, worth the effort to take everywhere too! Im taking it with me for sure for surgery! Hope things improve, I know pain control hard, there are no quick answers, just gotta keep moving! I also enjoyed that you discussed the family difficulties during recovery- no one is doing anything maliciously but it's hard to work together. I have this worry about recovering too, especially since I live alone and am used to everything my way haha, but we work through these things :)
You sweet girl are amazing !
Hey Christina! I'm happy to see that you are home and recovering...slowly but correctly. I also see the same pain specialist...in fact, he was the one who diagnosed my EDS, MCAS, and POTS. luckily I live in RI so my commute is not an issue. Actually I was in his office last week for cervical facet injections...I missed you by a couple of days🙄
I hope you continue to progress in your recovery...and try to remember to be patient! One day at a time 🤗
I also think your mom is awesome! She is a champion driver and care giver 👍👍👍
Those crochet shawls are amazing! I love doodling with crochet, I don’t trust myself with it for clothes yet, but I can make shapes well. I wish I knew how to get yarn cheaper.
I love yarn and crocheting. I crochet around a rubber band it's very pretty and make it look like a flower.
I suck at being on strict bed rest. I go crazy and I have to get up and I feel like I can just push through it anyway. When in reality it hurts me in the long run sometimes. I hope you feel better soon. You are always in my prayers. Sending love and light your way.💙✝💙
Being laid up after surgery I’m also watching outlander well I’ve just finished it . Like you I love it . Hugs xxx
Oh yes the gripper, still have one somewhere, it was more for when I was bedridden use that. And I can relate when it comes to family, it can be tough, also have other family members that are ill, so can be bit crazy, but as don't live with them, so when together there has to be adjustments, that in self can be difficult. By the way, glad you have great Dr, you doing well, just take your time, let yourself rest, I know easy said than done lol. x
You inspire me xx I have had my neck fused and due to complications I spent a week in ICU and a further two weeks in hospital. Thankyou xx 😘 can I suggest you set up an Amazon wish list with the wool you need to make your crochet things then you could sell things for charity in your Etsy shop.
Nice Vlog Christina, you are an inspiration to me, you are so brave and never lose your smile. The only channels I've subscribed that are related to medical issues are yours and "The Frey Life". I will be watching (and liking) all your future videos. I hope that science will eventually come up with solutions that will help all people struggling with chronic medical illnesses better their lives or even cure them.
haha the end with your grab stick! 😂😂😂
parents have hardest job and now im a parent i realise how much strain was put on mine and trying be there for all kids but when a child has chronic illness it also can cause probs between siblings as siblings are known for not always being considerate and as siblings jealousy plays big part too when 1 parent has to spend more time with one and the its unfair your never here your always with them etc always pops up no matter age lol been through it all with my siblings
Your blue and white striped shirt is cute. Oh pretty crochet sweater.
I'm currently on the 3rd book. My library has digital audio books called playaways. I love these!
You were so funny in this video I love it!
The thin yarn you received are really good for pot holders and book marks look on CZcams and get some ideas.
You should buy an alpaca. Keep it in the back yard. They have the best wool!
I'm about to move you guys down to my house! I told you before I'm also in MA but I'm only about twenty minutes from RI. I'm desperately looking for a pain management doctor and hearing you talk about your doctor makes me want to try and grab one of those appointments! Anyway, I hope you're on the mend and starting to feel better!
+1 Definitely get on the list! Dr Chopra is the best in the business And you have the advantage of being so close that should a last minute cancellation happen you may be able to jump in
I really sucked at following my post surgical instructions after I had my cataract done. I didn’t even have my EDS DX then and still the restrictions were almost impossible to follow. So, I have retinal damage as a result. With some post op instructions I think it is almost impossible to be fully compliant. (Especially if the post-op support you were promised falls through but that’s another story.) All we can do is our best especially considering that things like excretion still have to have to happen no matter what our post op instruction are.
Hi Christina, I am glad you had a good appointment. It might be a strange question but when you said your shoulder was popping a lot, can you actually see it? or is it more like a cracking sound? good luck on recovery
Praying for u
Holy Bible
Wish you all the best!
Met our great doc Henderson past saturday. Need to get a neck fusion 😕. Payment was not good...... he took our son 😂😂😂. Love the man, do not like the neck 😜.
I need to see him. I wish he wasn’t so hard to see.
I would totally pay for that shawl
Your incision is looking great!! Do you have trouble healing skin wise? I know a lot of EDS people can have skin and scarring issues.
need use a voice recorder to your major appointments so have all was said i do i hope you will sell them i love all you have made so beautiful also i was curious you would do another vid on crocheting beginners as i really want learn so i can make some clothes for my prem baby girl hard to find clothes to fit and want try make a poncho for her and other items
not only old people have those grip claw thingys (I'm Swedish and I don't know what they're actually called in English), though. I'm disabled in a wheelchair, and I have several and need them.
NotDeadJustYet Here in the US they're marketed towards elderly people on late night infomercials.
+NotDeadJustYet I am loving it!!!! Everyone should have one of them! Ive had it just a few days and am already wondering what I did before it
I was wondering what you thought of Jesus Chris Superstar! I personally thought it was great. :) Its one of my all time favorite musicals so I was hoping they'd do it justice!
I wish I could post a pic in the comments of the sweater I'm crocheting girl I know what you mean yarn is ridiculous, love your vlogs! 💚💚💚
+Mason Plank Ooh I would love to see! If you ever post it on social media you can tag me 😊
💜 I'm hoping the best for you and your family through this tough time. I don't know if you've heard of it, but i use headspace for meditation. It's an app. I pay $8 a month for it but there is a free option.They have a pain management meditation pack and sleep meditations. I use the anxiety and sleep meditations daily. If it helps - try using "I feel" statements with your family during times of frustrating conversations with them. "I feel" statements help communicate how you're feeling to others in a way that doesn't make them feel attacked. E.g "I feel _"insert emotion here"____ when you do/say______."
+Faris Jaclyn I actually do use and LOVE headspace! But have kinda fallen off the bandwagon. Its my goal to get back to doing it everyday. Thanks for the reminder!
Of course girly! Keep up the good work! Our conversation is reminding me to use it too!
check out phillip pullman's books on Audible. the book of dust is amazing but start from the beginning!
loved the video :)
Please do make blankets I would buy it in a heartbeat
You are so lucky that you have a treatment plan . And I'm so happy for you that you have a good medical team .
Where I'm from Copenhagen Denmark in northern Europe/Scandinavia . Us with EDS or Hypermobility syndrome . Don't really have any treatment . Other then painkiller .
Where i got my diganosen the doctor ( the only doctor in my contry that was an eds Hypermobility syndrome special ) gave me a pad on my shoulder and said , you just have to live with youre pain and be aware that you will end up in a wheelchair some day .
Ina Hansen I'm so sorry 😞😞😞
That’s retarded, can you travel?
Totally the same in Germany, I feel you! It's funny when people say "Oh my team has decided we want to do that..." and "Oh my new treatment plan is this..." and we're over here and have nothing. Don't get me wrong, I don't blame the guys that get the right treatment, I blame our situation here.
Ina Hansen I have given up on the public health care system in Denmark.
Does anyone know the legalities concerning CBD oil? I live in Texas and would really love to try Theramu’s products, but I don’t know if it would be legal to do so.
Have you ever tried making coil baskets? I find them super relaxing, I don’t know if they would be something your interested in. They have videos on CZcams on them if you want to check them out.
You said March 2nd on the video when talking about If you had easter
Demoted to the full brace? Is the full brace significantly different in comfort than the neck portion?
+Pat Kole Yes and no. It’s definitely more restrictive and stabilizes more areas. In some ways I find it more comfortable but in others its less since there is a strap around your middle. The goal is to spend less time in it to build back muscle. But sometimes you just need the extra support Nd the reminder of not pushing it with your movements
You are a very brave human being. They want to do a fusion on my thoracic spine, but they told me there is a possibility that I could get worse because of other conditions that I have. But like you I think that I have a phenomenal primary care and medical treatment team. At my clinic they follow the patient centered care model along with a care coordination team. I have my own nurse, social worker, doctor, and pharmacist that i see and speak with frequently. It's called "Think Whole Person Health Care". The have PT, podiatry care, optometrist, and many other specialty doctors under one roof. They sell essential oils and they even have a comfort room and a massage therapist. If only all doctors offices were this awesome.
Here's the website if you ever have a warrior ask for a good place in Nebraska: thinkhealthcare.org
Ebony Marie that sounds so lovely ! I had thoracic fusion surgery 5 months ago I had T5 to T 12 done , still in a lot of pain so make sure it’s the only option for you , as far as I know thoracic fusion is the hardest to get over , I had a cervical fusion first and that was so easy to get over in comparison, but I am hopeful for the future . Good luck for future xx
I. LOVE. OUTLANDER.
If your spine is fused, does that mean you can't bend your back? You are upright forever?
What is the name of this pain doctor? I’m collecting Mass doctors to keep in my back pocket for when I need them. Still figuring out which doctor to see for dysautonomia though.
Would a "knee scooter" enable you to slowly propel / awkwardly move yourself around the house with a little more accuracy (and hypothetically a little less banging into walls) than the desk chair?
You said that your knee surgery team cleared you for 20% weight bearing on your toes BUT crutches were a NO because of your shoulders... the "knee scooter" would let you rest your weight on your good knee and steer with your arms. Or maybe you could figure out a way to sit on the knee platform and shuffle around? I dunno... but I completely understand your feelings and frustrations with your family's current sleeping arrangements. I know that I am difficult to live with, and I would not want to live with me, either.
I think you hit the nail on the head about the lack of doctor that treat EDS patients. As someone from Texas, it has cost so much to travel to Maryland and California to get the treatment I need as an EDS patient. You would think, in a state like Texas, there would be a doctor that specialized in EDS that could treat tethered cord, cervical instability and the plethora of other spinal instability issues we have. But there isn’t. I have been so fortunate to find a doctor that treated specializes in TMJ and treats EDS patients in Texas. My pain management doctor, while not super knowledgeable about EDS, did extensive studying on connective tissue disorders. It’s going to continue to take spreading the word about doctors for other EDS patients to see the doctors they NEED to see. By the way, I’m the say way in my appointments. There is no way I could take notes and talk with my doctor at the same time. My ADHD would not allow it. Perhaps this hurdle your family is having will come to be an experience you were glad to have had rather than not. Hope your week is going well!
Ever tried recording the appts on the phone?
NJSMKMMS I’ve thought about but wasn’t sure about the legality of it.
Oh I did mean ask the Dr if they mind if you record, because you have ADHD, and you want to listen and ask questions but not forget anything either. I have brain fog which I know is similar to ADD. Most of my Dr's are happy about me recording. They know I will remember what they told me to do then.
NJSMKMMS I’ll definitely start doing that because I have so much trouble remembering what they said sometimes. One or both of my parents come with me so we get all the information.
Yes, absolutely we all need to do what ever it takes to get the best possible treatment we can. Best wishes with it all.
Wow! What ana amazing pain doctor you’ve found! The ones at our local centre of excellence have never bothered to see me but send out an online questionnaire every couple of months to see whether you’re stable or getting any worse, but nothing seems to be done about it. Try and ba a little patient sweetie. Your spinal fusion will soon be fused and then life will be a LOT easier for all of you xxxxxxxxxx
How is your leg now Christina 🤗
Himanshu Jindal okoo
Hey. I have EDS and desperately need to find a specialist!! Is there anyway you could tell me who ur specialist is?
You put March and its not March anymore it April now lol lol I been do it too.
+Tina Wood Shoot! Haha I keep doing that!!! Oh well 😂
Search freeform crochet on pinterest!! there's some amazing, organic-looking creations out there.
what pain dr do you go to??
Haha! That Dr knows you so well he told you 730 when he was planning on 8!
5 hour pain dr appointment?, mine is 5 minutes
Does your sister have eds too?
"100% biblical" 😂
Hey Christina I'm wondering if your sister also has chronic pain since she has EDS as well? I'm close to her age, and deal with chronic pain, so I was just curious, but if that's something you guys would rather keep private I completely understand. Hope you have a good week
Nerin I do:/ I deal with a lot of headaches/ pain from subluxations and fatigue
Oh thank you for responding Lauren. I've been having joint and nerve pain for the past 2 years with no diagnosis, it sucks but it's kind of comforting in a weird way to know I'm not alone in it although I wish none of us had to deal with it. We just have to take it one day at a time
To what doctor are you going? And does he take international patients?
+CC S Yes! He does take international patients. Im not sure how they handle that payment wise, but I do know he has seen people from all over. I don’t think he would mind me sharing his name. I see Dr Pradeep Chopra in Rhode Island.
Christina Doherty I already found him via the picture you shared and wrote an email :) thank you
Christina Doherty I already found him via the picture you shared and wrote an email :) thank you
My family is awsome for the most part if they would just get the fact I don't want to keep fighting and let me die it would be cool but they refuse to let me have what I want. I'm 30years old with two kids if I choose to die it's my issue not there's they all get Rich from my life insurance policy so who wouldn't wanna get paid and not have to worry about that person it's a win win for them and a lose lose for me 💯💯💯
I didn’t know your sister had health issues also. Does she have EDS too? So, if you are getting all the attention, certainly clearly needed, is there any left over for her? Please, I’m just trying to understand it all, so don’t be offended. There’s nothing different that you can do. Remember, This To Shall Pass! Your pain specialist sounds like one of a kind! So glad he isn’t leaving you! I worried that that might be the case. I wish your life was easier. It will be in time. God Bless.
You mentioned that you are not the only chronically ill person in your family. Does your sister also have EDS?
Why do you not go to Dr/dentist closer home...I am sure Boston has some of the best medical personnel in the US..just wondering
+Carol Goode I wish! You would think that Boston would have the very best care, but unfortunately there is so little understanding of EDS by most of the doctors here. They are really great with many other specialties, but unfortunately this isn’t one of them. There are really only a few dentists in the country who specialize in this. I have been undergoing treatment for TMJ issues here at home since I was 10, from multiple “specialists” but it only got worse. It got to the point where I couldn’t open my jaw at all and it was impacting my hearing. This is the first dentist who has ever helped my symptoms, so its worth it!
Christina Doherty thank you for the answer, I have just now finished watching every vlog, I like to go back to the very beginning and watch so I have been binge watching for 2 days...I an a 69 year old great grandmother and have several autoimmune diseases, plus into my ninth month of cancer treatments..I also have systemic Mastocytosis...a little different than what you have but I do understand about Mast cells...I love your positive attitude... can’t wait for more videos..God Bless you sweet girl!
I’m so sorry if this is rude or nosey... Does your sister also have EDS? Or another Chronic illness?
Jennifer Murray I answered that on cora bailey's comment above :)
I do:) I have EDS and POTS too
Does your sister have EDS too?
Cora Bailey She does but I believe she said it's much different and not as bad.
Yes I do :)
Lauren, that makes a lot of sense.
Lauren Doherty I would love to see you guys do a video together where you talk about how it affects both of you compare and contrast type of thing?
Marisa Visser we have been trying to find a time to do it!
Christina if you are in need of a greatest hits playlist of John Legend while you are recovering, let me know and I will happily provide. I hope you're doing well all things considering (I'm only 2 minutes in because I knew I needed to comment when I realized that your life was lacking in the greatness of John Legend). Jesus Christ Superstar is amazing, excellent choice.
Jill Kealling I was going to write the same thing. I love him.
Lol, glad to know I'm not alone.
Was Jesus born on Easter or Christmas?????????!!!! 💀