Keep fighting for your rights! The insurance companies will try to grind you down. Don’t let them beat you down. It’s disgusting that you have to do the insurance battle when you need all your energy to heal your body. I’m pulling for you!
Our sweet Christina, I know what you mean... For me I have always been sick, but the moment they put a label on my mysterious symptoms (EDS) some friends just started to dissapeared. But like you say, we have so little time with medical appointments and therapist, that sometimes meeting with friends gets tricky... You say friends getting married, I am the oldest of 4 cousins who have the same age and 2 are getting marry in the space of 4 months... But I am happy were I am, I have family and friends (both online n here) that support me even when my body is giving out. I wish you all the positive energy with your insurance battle, like I told u, here in Costa Rica is diferent, but for my EDS meds everything comes out from my own pocket. So keep on that smile and dont let your guard down :)
I'm only 16 and not a lot of young people understand what us spoonies go through, so I don't have a whole lot of friends there to support me. That's ok though, I am thankful for the ones I do have.
Oh hunn, that's awful. I'm 27 and I have tons of friends with illnesses as well as being disabled and having a ton of medical issues to boot. I'm lucky enough to have great support so if you ever want to talk I'd love to be there for you and help you feel less isolated 😊
Mackenzie Powell If the teachers are even willingly to try and understand. My pe teacher thought I brought the wheelchair with me for fun and attention. Needless to say I never went back to his classes. School is a pain in the butt, nobody understands how you are feeling, you miss almost every class for not feeling well or if you feel well you have therapy or hospital stuff going on, everyone stares at you, no energy for a social life, the school trying to kick you out for being sick a lot despite being a straight A student, nobody cares to talk talk to you or ask what's wrong just because I've got a wheelchair etc. Chronic illness warriors should just start a own town so everybody understands the stuff going on in their lives😂😂
Reny Putman That'd be awesome! No teasing, no dirty looks. We'd get looks of concern a lot more and probably we'd all help each other because we understand each others pain 😮🙂
My heath and PE teacher wouldn't listen to my 504 plan (a legal contract saying that I have certain rights as a person with a health issue and disability) and she wouldn't allow me to take a test on another day because I was apparently faking my brain fog and I didn't study. That made me realize that not everyone actually understands living with and every day illness.
I love your channel, it truly helps me so much. I am only 18 but am going through a lot of struggles, you inspire me to stay positive through all the pain. I can’t thank you enough for being that light in my life. If you didn’t know already, what you do here on TH-cam really does make a difference , at least In my life. 💕💕
+Christi Sarnecki Awww thank you Christi! You are incredibly sweet! Im glad that I have been able to help you in some way even if I can’t be there in person. 💕 Hang in there girl!
Prayers and thoughts for you! Thank you for sharing your journey! I share my journey on TH-cam as well because I’ve watched you tubers like you sharing your life and it makes me feel less alone :)
You seriously give me hope! It's soo nice to listen to your voice and have someone understand the struggles of a chronic illness. I hope you have good week with the least amount of pain possible. Much love from Germany!
+unknownxbeautie Oh well good! Im so glad I have been able to help you in my small way. Lots of love back! I can’t wait to visit Germain someday. My grandparents are from there and se still have a lot of family there 💜
It's SO true when you said that everyone's moving on and you're just kind of stuck because of a chronic illness. I think that's one of the absolute hardest parts!
+Liz Mastro It is hard, but Im not too upset. Friendships change just like any relationship. And I have been having a great time meeting new friends. But its still hard, I feel like Im not really in the same stage of life as my peers. And honestly, sometimes I feel like its hard to relate with people when I don’t have much to add to the conversation except medical stuff lol. Its been my life for a while, and I haven’t been able to do much else.
Christina, when you were mentioning all the different upcoming appointments you have, I was thinking, "Yup, been there, done that - doing it still". Chronic illness is a full-time job in itself! One thing I have found is that over time, symptoms may change. Some things get better, some go away; some things get worse, new symptoms appear. It seems crazy, but it's is all too real. I validate what your going through. Some ideas: Think of pain not as PAIN, but as your body sending you a signal you need to explore and treat (stretching, PT, ice, heat... you know what I mean). Mediation will help, too. Finally, can you do some of your PT at home? I keep a notebook full of exercises I have done, and revisit it often. If you have less PT appointments available, this can help you maintain and strengthen, regardless. Have a good day! :D
+Cheryl Coderre It really is a full time job! I desperately wish I could do what my PT does at home. I have a bunch of home exercises that Ive been doing. But im unable to relocate joints the way she does and without that I cannot even do the exercises. I love what you said about pain though. I have always been pretty anti pain meds for that reason. Ive always said “pain is just a signal to let you know something is wrong, thats a good thing.” But now we know whats kinda going on and what triggers it. Hopefully if I have surgery it will help, otherwise Im going to have to start changing my view on it. Sometimes I talk to it like a weirdo “Okay I hear you, we are working on it.” 😂
I do a fake tree now because it's easier for me living alone. I just keep it in my closet and take my time assembling & decorating it even if it's a 2 day event lol. If I had someone to put a real tree up for me i would definitely do it I love the smell but I just burn some pine scented candles instead to make up for it ;)
Yay for Love Your Melon! I have a super adorable blue slouchy beanie from them that I can’t wait to wear this winter. Decisions about your health can be so difficult to make, especially for you since you have so many co-morbid disorders. Add in fights with insurance and it’s just the woooooorst. Man, I 100% feel you on being too stubborn to take rescue meds; I do it all the time with my migraine meds and it’s always a horrible decision. Love the constellation necklace, I should try to make one like that of my favorite constellation (Orion)! Hope this week is better for you pain/health wise!
22'42": What a coincidence! My mom has just come back from Peru and there she bought herself the same Indian Elephant bag! (or extremely similar) It is really beautiful!
First off, LOVE the glasses!! They suit you so well! I hope the insurance company gets back to you and works with you like it should rather than against you. I hope your auditory processing testing went well today. Love and spoons!!
Well, not really good news, but just keep swimming! It may not feel like it now, but you will get all this insurance stuff figured out and I hope that knee can be fixed too. And the Christmas end slate was a nice surprise 🎄✨Love ya
I have had three ACL surgeries on my right knee but in total eight surgeries my last one being a total knee replacement that failed. I say failed because a year after getting it done I was diagnosed with EDS had we known that I had EDS surgery would have never been done reasons for all these ligaments breaking after all the surgeries was EDS. Lack of knowledge from Physicians and surgeons makes me cry that I had to endure so much pain throughout my youth & throughout my adulthood and now I'm 40 and could barely walk. I tore every ligament in my right knee to be put back together and broken again and reconstructed. A year after my total knee replacement I tore my MCL. I believe I tore my LCL also but that hasn't been confirmed (no MRI done). I know my body and it's the ligament that I've tore before. I have to look for a new orthopedic that specializes with EDS I don't care if I have to go to China I need help!!!!
+danyce Pabon Geez, my heart breaks reading that! All I can say is that I will let you know how things go with these surgeons if I see them. Operating on an EDS joint is a completely different thing than a normal patient. ❤️
I'm praying that everything goes well and it was lovely talking to you on Facebook the other day and I just hope that you're able to relax and not have as many problems with your allergies and that your allergist gets back in touch with you I know how hard that can be to wait.
That's great about possibly getting your knee fixed! I wonder if there are people who you could communicate with who have had the surgery done, so you can get an idea of what to expect? I always enjoy your videos. You have the gift of making others feel happy.
+barbara henninger Thanks! Yeah, I mean, we are all baffled by it to be honest. Nobody seems to have seen this combination of problems before and we can’t even really figure out the root issue. Are there tears? Is it just loose ligaments? We don’t know. I wish I could meet someone else with this issue for sure
+Kagomegrrl21 Thank you! This is exactly what I ended up doing Nd it works like a charm. Im kinda anal about sterility so I never thought to out it need water. But it was find. I had a perfect little container so the tubing and meds ports stayed dry
Hey, I think that necklace you made goes well with the sweater you were wearing! So, you should totally keep it for yourself. Hopefully your insurance behaves. It's nice to take advantage (the good way, as I couldn't think of another way to word it) of it while you have it. Sorry you are struggling. Yikes, your knee sounds terrible. Ah I wondered what had happened to that BF, sorry things didn't work out but at least you have friends! I do not have anyone visit me. Last time my friend did, a fragrance on her made me cough and almost wheeze. She said it was not perfume and didn't know what it could've been. I think perhaps fabric softener or something. But hey at least I have my husband and his parents. For me, my struggle lately is my stomach. The issue has gotten worse in the past year. Like this morning I eat only a few bites and feel full. I get bloated easily sometimes. And have gas in my upper stomach. We think possibly gastroparesis (mild form as I've read about others w/it who are worse then i am) since it is co-morbid with EDS. But haven't bothered getting it checked or diagnosed yet. Not sure if local clinics would know about it or not. You're in my thoughts and prayers, plz add me too, thanks. :)
+Jessica Tieking Of course I will add you! ❤️⭐️ Im sorry you are struggling. GI symptoms can be so difficult to figure out. And I hear ya on the fabric softeners! Laundry detergent and softeners kill me too. I have perfected the “across the room air hug”😂
First of all I'm sending you hugs and prayers and I'm sorry your struggling so much lately❤️❤️. But I can't help but almost laugh at how ironic it is you might be sent to a doctor in Wisconsin since in January I'm going to Wisconsin to see dysautonomia and GI specialists!😂. Oh the places we'll go for medical care!
My friendships have changed too. At this point in my life the vast majority of my friends are chronically ill or have chronically ill children. Most other people just don't really get it. We do fake trees. I got really ill as a child one year as soon as we brought the tree in the house. After that fake trees.
+Trekkifulshay It sad but true. The waxing and waning of friendships is natural in life, but its hard to feel left behind. And sometimes you wish they could just “get it.” But you don’t REALLY want that since you kinda need to get it to get it if you know what I mean ❤️
I was wondering if your condition will continue to improve with treatments? The only thing I know about EDS is from you and you are kick ass strong for doing all that you do. You're amazing!!! I hope you're feeling ok today. Sending good thoughts.
+purr bugaloo hahaha well thanks! Thats a tricky question. There is currently no treatment, or should I say, no cure, for EDS the best we can do it manage the symptoms as they arise. So yes, my condition has the chance to improve some as ai get the symptoms under control, but it will always be there. So its going to always be a lot of ups and downs for me 💜
I use a fake tree. I can't do pine at all and mom can't do bertch so we have not had a real tree since living in ID when I was 8. I miss going up the mountain and picking out a tree. But kinda isn't something you can do in OK anyway. Just smelling a peice of pine wood can send me into the ER. Maybe you saw my post the other night when I said my lungs don't like me. Got a new bookself and had some pine in it. Right away I couldn't breath and hurt, then had rashes. So I traded it. Was a bummer. Still amazing how little is needed to set everything off. Lungs are still not all the way better but the rash has past.
+TheJanaRina I can’t really. Just basic words but Im not good enough yet to really put together full thoughts. But im working on learning and hopefully will be taking a class on it soon
Hi Christina! I hope you're doing well this week. I've had surgery on my knee to stabilize my knee cap 20 some years ago. I've just recently started to have problems with it hurting. I know that a doctor told me I have an ACL problem but I don't know what it is. I was diagnosed in January with EDS in Madison Wisconsin and I'm curious who the doctor is in Wisconsin that you might see.
+Common Sense I sill definitely get his name for you when I know more! Shoot me an email in a couple weeks if I don’t follow up with you and remind me. Im glad to hear though that the surgery seems to have given you a lot of time. Im always scared of the horror stories of people who just have to keep getting them and have them fail 💜
Do you happen to have any green line/tube clips that you out your tubing in? I have mitochondrial disease and on saline anf d5 infusions daily and would love to get one of them You're such a sweet strong inspirational warrior!
+stacy klostermann Yes! Okay so I JUST relisted the tube clips in my etsy shop (ChristinaPaintsStuff). I had run out of supplies. But I have a polka dotted mito greet color and then. Lime green zebra print. 😊
+Erin's World Yes! So I have a number of vlogs on my TMJD treatment process. I have to travel about 10 hours, so its kind nuts. But this is the first time splinting treatment has ever helped me. So its worth the drive. I wear a day splint all day and I have a special one for the night. I have had treatment on and off since I was a kid, but this time I have an amazing dentist. If you live in the Virginia area let me know, hes great!
Have you ever had a paradoxical reaction to a medication? I have one to benzodiazepines which makes sedation hard. If you do how do you handle it/how do you tell a provider? Also do you ever get anxiety with procedures? If so how do you over come it? I've tried using oils, focusing on my breathing, listing to music. It all seems to help leading to the procedure, but as soon as I get into the actual procedure room I become overwhelmed. Just looking for tips! THANK YOU!!!
+Sarah I have definitely had some weird med reactions and sedation issues. I don’t really breathe well with conscious sedation, so I do most procedures without much. I definitely do get anxiety about it. I never used to, but ever since the “allergic” reactions started im always scared of a reaction during a procedure. The best thing I can say is to just breathe. I always as the doctors and nurses beforehand to engage me as much as possible, I tend to freak out more when its quiet. Talking helps me with that. Let them know too if there is something they can give you that works to calm you. Its not uncommon, they usually have something on hand. I usually go med free on that one though since my fear of a reaction to it sorta negates the calming effect 😂 But yeah, I mean, my internal dialogue is usually “okay, this is happening, you are okay, they are in control, if something happens you are in the right place, this will be over soon and then itll just be a memory.” ❤️
I don't know if this is appropriate to ask but I've always been really curious. In the event the dislocating gets too much to handle even with physical therapy, would it be viable to amputate the problem limbs and get prosthetics? Or would that cause more dislocating? All hypothetical, I'm just curious!
+Paola Martinez Its definitely not something I have heard of. That doesn’ mean It never has I suppose. But the condition unfortunately is in your whole body, so something like that would be a huge step with likely little reward. Im sure it would put an immense amount of strain on other joints and cause a pretty bad domino effect. I don’t even think a doctor sould consider amputation in these patients anyway, not unless the limb is truly a danger in some way. Plus we have poor wound healing which would play a factor. But thats an interesting thought
Hi christina i have another question and im sorry but i look at you for some help lol....have you had issues with your kidneys with the eds pots dysautonomia? I was informed im in stage 3 renal failure but this didnt get this bad until they started treating my pots. Was just curious if this has to do with all these crummy diseases we have.
+Allison Gordon Oh Allison, im so sorry to hear that! No my kidney function is pretty good. We watch it pretty closely because of some of my meds. What are they doing to treat the POTS?
I am allergic to trees because pollen is my worse reaction so we do a fake tree, but I love real trees, they are so pretty. But my body thinks they should stay outside 😂
+Lanie Wisniewski I hear ya! Luckily im not reactive to pine trees (go figure) but I do react to most flowers. We will just have to appreciate them in nature and not inside 😊
![[TH] 2024 PMGC League | Survival Stage วันที่ 1 | PUBG MOBILE Global Championship](http://i.ytimg.com/vi/FVFT-PFwU80/mqdefault.jpg)
Keep fighting for your rights! The insurance companies will try to grind you down. Don’t let them beat you down. It’s disgusting that you have to do the insurance battle when you need all your energy to heal your body. I’m pulling for you!
Nothing beats a great pair of glasses.I pray for you every time I think of you. Love your videos even though they get me teary eyed.
+Christopher Youse Thank you so very much Christopher. You are too kind 💜
Our sweet Christina, I know what you mean... For me I have always been sick, but the moment they put a label on my mysterious symptoms (EDS) some friends just started to dissapeared. But like you say, we have so little time with medical appointments and therapist, that sometimes meeting with friends gets tricky... You say friends getting married, I am the oldest of 4 cousins who have the same age and 2 are getting marry in the space of 4 months... But I am happy were I am, I have family and friends (both online n here) that support me even when my body is giving out.
I wish you all the positive energy with your insurance battle, like I told u, here in Costa Rica is diferent, but for my EDS meds everything comes out from my own pocket. So keep on that smile and dont let your guard down :)
I'm only 16 and not a lot of young people understand what us spoonies go through, so I don't have a whole lot of friends there to support me. That's ok though, I am thankful for the ones I do have.
madelyn kunkle I totally feel your pain, it's very hard to explain to teachers
Oh hunn, that's awful. I'm 27 and I have tons of friends with illnesses as well as being disabled and having a ton of medical issues to boot. I'm lucky enough to have great support so if you ever want to talk I'd love to be there for you and help you feel less isolated 😊
Mackenzie Powell If the teachers are even willingly to try and understand. My pe teacher thought I brought the wheelchair with me for fun and attention. Needless to say I never went back to his classes. School is a pain in the butt, nobody understands how you are feeling, you miss almost every class for not feeling well or if you feel well you have therapy or hospital stuff going on, everyone stares at you, no energy for a social life, the school trying to kick you out for being sick a lot despite being a straight A student, nobody cares to talk talk to you or ask what's wrong just because I've got a wheelchair etc.
Chronic illness warriors should just start a own town so everybody understands the stuff going on in their lives😂😂
Reny Putman That'd be awesome! No teasing, no dirty looks. We'd get looks of concern a lot more and probably we'd all help each other because we understand each others pain 😮🙂
My heath and PE teacher wouldn't listen to my 504 plan (a legal contract saying that I have certain rights as a person with a health issue and disability) and she wouldn't allow me to take a test on another day because I was apparently faking my brain fog and I didn't study. That made me realize that not everyone actually understands living with and every day illness.
I love your channel, it truly helps me so much. I am only 18 but am going through a lot of struggles, you inspire me to stay positive through all the pain. I can’t thank you enough for being that light in my life. If you didn’t know already, what you do here on TH-cam really does make a difference , at least In my life. 💕💕
+Christi Sarnecki Awww thank you Christi! You are incredibly sweet! Im glad that I have been able to help you in some way even if I can’t be there in person. 💕 Hang in there girl!
Ps love the new holiday ending. Wish you did that for every holiday
Prayers and thoughts for you! Thank you for sharing your journey! I share my journey on TH-cam as well because I’ve watched you tubers like you sharing your life and it makes me feel less alone :)
+Alli Cat Oh awesome! Ill totally check it out! 💕
You won the rug battle. Yayyy!!
You seriously give me hope! It's soo nice to listen to your voice and have someone understand the struggles of a chronic illness. I hope you have good week with the least amount of pain possible. Much love from Germany!
+unknownxbeautie Oh well good! Im so glad I have been able to help you in my small way. Lots of love back! I can’t wait to visit Germain someday. My grandparents are from there and se still have a lot of family there 💜
It's SO true when you said that everyone's moving on and you're just kind of stuck because of a chronic illness. I think that's one of the absolute hardest parts!
+Liz Mastro It is hard, but Im not too upset. Friendships change just like any relationship. And I have been having a great time meeting new friends. But its still hard, I feel like Im not really in the same stage of life as my peers. And honestly, sometimes I feel like its hard to relate with people when I don’t have much to add to the conversation except medical stuff lol. Its been my life for a while, and I haven’t been able to do much else.
Christina, when you were mentioning all the different upcoming appointments you have, I was thinking, "Yup, been there, done that - doing it still". Chronic illness is a full-time job in itself! One thing I have found is that over time, symptoms may change. Some things get better, some go away; some things get worse, new symptoms appear. It seems crazy, but it's is all too real. I validate what your going through.
Some ideas:
Think of pain not as PAIN, but as your body sending you a signal you need to explore and treat (stretching, PT, ice, heat... you know what I mean). Mediation will help, too.
Finally, can you do some of your PT at home? I keep a notebook full of exercises I have done, and revisit it often. If you have less PT appointments available, this can help you maintain and strengthen, regardless.
Have a good day! :D
+Cheryl Coderre It really is a full time job! I desperately wish I could do what my PT does at home. I have a bunch of home exercises that Ive been doing. But im unable to relocate joints the way she does and without that I cannot even do the exercises. I love what you said about pain though. I have always been pretty anti pain meds for that reason. Ive always said “pain is just a signal to let you know something is wrong, thats a good thing.” But now we know whats kinda going on and what triggers it. Hopefully if I have surgery it will help, otherwise Im going to have to start changing my view on it. Sometimes I talk to it like a weirdo “Okay I hear you, we are working on it.” 😂
I do a fake tree now because it's easier for me living alone. I just keep it in my closet and take my time assembling & decorating it even if it's a 2 day event lol. If I had someone to put a real tree up for me i would definitely do it I love the smell but I just burn some pine scented candles instead to make up for it ;)
+Amanda Mroz Oh yeah, I can imagine that would be a whole lot easier to manage. Im duper lucky my Dad loves to go out and get the tree and decorate it
Love the necklace!!! You need to do more spooky jewelry girl! I would be all over that
Gotta have the natural trees! Better for the environment anyways :)
+Tayla Robichaud Girl, I will make whatever jewelry your little heart desires! Ill design a whole Tayla collection 😊
Yay for Love Your Melon! I have a super adorable blue slouchy beanie from them that I can’t wait to wear this winter. Decisions about your health can be so difficult to make, especially for you since you have so many co-morbid disorders. Add in fights with insurance and it’s just the woooooorst. Man, I 100% feel you on being too stubborn to take rescue meds; I do it all the time with my migraine meds and it’s always a horrible decision. Love the constellation necklace, I should try to make one like that of my favorite constellation (Orion)!
Hope this week is better for you pain/health wise!
+meganer12 Definitely send me a pic if you end up making Orion! And aren’t they just the coziest hats ever? LOVE!
If you end up getting surgery on your knee in Wisconsin I would love to meet you. I live near Milwaukee!
Same! I'd totally come and visit :)
Same here! If you come to Wisconsin I’d love to meet you!
22'42": What a coincidence! My mom has just come back from Peru and there she bought herself the same Indian Elephant bag! (or extremely similar) It is really beautiful!
+Cecilia RR Thank you! I love my elephants 🐘😊
First off, LOVE the glasses!! They suit you so well! I hope the insurance company gets back to you and works with you like it should rather than against you. I hope your auditory processing testing went well today. Love and spoons!!
+Dana Max Thanks so very much Dana! ❤️ Everything went really well
Well, not really good news, but just keep swimming! It may not feel like it now, but you will get all this insurance stuff figured out and I hope that knee can be fixed too. And the Christmas end slate was a nice surprise 🎄✨Love ya
+Emilie H Thank you love! We are already well on our way. It just takes so much extra energy and effort to work out all the kinks 💜
Prayers to you ,I love your happy spirit,you inspire me..
I have had three ACL surgeries on my right knee but in total eight surgeries my last one being a total knee replacement that failed. I say failed because a year after getting it done I was diagnosed with EDS had we known that I had EDS surgery would have never been done reasons for all these ligaments breaking after all the surgeries was EDS. Lack of knowledge from Physicians and surgeons makes me cry that I had to endure so much pain throughout my youth & throughout my adulthood and now I'm 40 and could barely walk. I tore every ligament in my right knee to be put back together and broken again and reconstructed. A year after my total knee replacement I tore my MCL. I believe I tore my LCL also but that hasn't been confirmed (no MRI done). I know my body and it's the ligament that I've tore before. I have to look for a new orthopedic that specializes with EDS I don't care if I have to go to China I need help!!!!
+danyce Pabon Geez, my heart breaks reading that! All I can say is that I will let you know how things go with these surgeons if I see them. Operating on an EDS joint is a completely different thing than a normal patient. ❤️
I'm praying that everything goes well and it was lovely talking to you on Facebook the other day and I just hope that you're able to relax and not have as many problems with your allergies and that your allergist gets back in touch with you I know how hard that can be to wait.
That's great about possibly getting your knee fixed! I wonder if there are people who you could communicate with who have had the surgery done, so you can get an idea of what to expect? I always enjoy your videos. You have the gift of making others feel happy.
+barbara henninger Thanks! Yeah, I mean, we are all baffled by it to be honest. Nobody seems to have seen this combination of problems before and we can’t even really figure out the root issue. Are there tears? Is it just loose ligaments? We don’t know. I wish I could meet someone else with this issue for sure
if it's surgery in Green Bay area I have a spare room. I love my orthopedic surgeon here and he knows eds well my surgeries have gone really well
+judgebythefruit Aww thanks so much! Im glad to hear that you have had so much luck with orthopedic surgery ❤️
As always, I love when your vlog comes out each week. Sending many gentle hugs your way!
+DarkBlue Matter You are too sweet! 😘
try getting hot water or warm water in the sink and but the bag in the water
+Kagomegrrl21 Thank you! This is exactly what I ended up doing Nd it works like a charm. Im kinda anal about sterility so I never thought to out it need water. But it was find. I had a perfect little container so the tubing and meds ports stayed dry
I WANT THAT GNOME😭😻
+Lauren Doherty Hahaha isn’t he precious! We ended up bringing him home. He needs a name I think. 😂
Hey, I think that necklace you made goes well with the sweater you were wearing! So, you should totally keep it for yourself. Hopefully your insurance behaves. It's nice to take advantage (the good way, as I couldn't think of another way to word it) of it while you have it. Sorry you are struggling. Yikes, your knee sounds terrible. Ah I wondered what had happened to that BF, sorry things didn't work out but at least you have friends! I do not have anyone visit me. Last time my friend did, a fragrance on her made me cough and almost wheeze. She said it was not perfume and didn't know what it could've been. I think perhaps fabric softener or something. But hey at least I have my husband and his parents. For me, my struggle lately is my stomach. The issue has gotten worse in the past year. Like this morning I eat only a few bites and feel full. I get bloated easily sometimes. And have gas in my upper stomach. We think possibly gastroparesis (mild form as I've read about others w/it who are worse then i am) since it is co-morbid with EDS. But haven't bothered getting it checked or diagnosed yet. Not sure if local clinics would know about it or not. You're in my thoughts and prayers, plz add me too, thanks. :)
+Jessica Tieking Of course I will add you! ❤️⭐️ Im sorry you are struggling. GI symptoms can be so difficult to figure out. And I hear ya on the fabric softeners! Laundry detergent and softeners kill me too. I have perfected the “across the room air hug”😂
We do a fake tree as my girls and I are allergic to real tree...hope you have a great week
I've only had a real tree once, and i HATED it because there were SO MANY SPIDERS.
I had to get a prism in my glasses too! It was the weirdest thing
+Mackenzie Powell Lol isn’t it weird? It certainly takes a bit of getting used to, but then they are great!
I hate that you are having a tough week last week honey here’s hoping the week ahead is better love and spoons 🥄
+Miss Adventure This week is already so much better! Thank you! You know how it is. Ups and downs, especially this time of year 💜
Christina Doherty so glad to hear that honey it’s so hard this time of year just got to keep fighting through xx
i think i work right by that homegoods/ tjmax. i also could be wrong ive only been in there a few times
+Victoria Lafond Oh too funny! 💙
That outfit matching voodoo is commitment! I always just wear black leggings so I don't have to think lol
+Alex Needs Spoons Lol gotta love black leggings! I have fount the trick is to buy everything in color families so everything always matches 😊
Now that's thinking ahead! I hope you had a wonderful Christmas (:
Hang in there!
+Malena Wilson 💜
First of all I'm sending you hugs and prayers and I'm sorry your struggling so much lately❤️❤️. But I can't help but almost laugh at how ironic it is you might be sent to a doctor in Wisconsin since in January I'm going to Wisconsin to see dysautonomia and GI specialists!😂. Oh the places we'll go for medical care!
+maura Grier Jeez I guess Wisconsin is the place to be! Who knew? 😊
My friendships have changed too. At this point in my life the vast majority of my friends are chronically ill or have chronically ill children. Most other people just don't really get it.
We do fake trees. I got really ill as a child one year as soon as we brought the tree in the house. After that fake trees.
+Trekkifulshay It sad but true. The waxing and waning of friendships is natural in life, but its hard to feel left behind. And sometimes you wish they could just “get it.” But you don’t REALLY want that since you kinda need to get it to get it if you know what I mean ❤️
Love you girl
+Maddy H 😘❤️❤️❤️❤️
I was wondering if your condition will continue to improve with treatments? The only thing I know about EDS is from you and you are kick ass strong for doing all that you do. You're amazing!!! I hope you're feeling ok today. Sending good thoughts.
+purr bugaloo hahaha well thanks! Thats a tricky question. There is currently no treatment, or should I say, no cure, for EDS the best we can do it manage the symptoms as they arise. So yes, my condition has the chance to improve some as ai get the symptoms under control, but it will always be there. So its going to always be a lot of ups and downs for me 💜
I use a fake tree. I can't do pine at all and mom can't do bertch so we have not had a real tree since living in ID when I was 8. I miss going up the mountain and picking out a tree. But kinda isn't something you can do in OK anyway. Just smelling a peice of pine wood can send me into the ER. Maybe you saw my post the other night when I said my lungs don't like me. Got a new bookself and had some pine in it. Right away I couldn't breath and hurt, then had rashes. So I traded it. Was a bummer. Still amazing how little is needed to set everything off. Lungs are still not all the way better but the rash has past.
+Lunar Wolf Oh man! I never would have even considered that when buying furniture! Thats nuts! Im sorry. At least you were able to swap it out 💜
Ya it's amazing. If pine was bombs I think I would be the bomb detector ever lol. You would be amazed how much is made of pine all around us.
You is so cute. Lots of love
+Amy Arthur Aww thanks Amy! 😊 You too!
my family uses a fake tree cause me and my mom are allergic to a lot of trees lol but i loooove real having the trees
+BeccaEmily I feel so lucky! Its just about the only tree I don’t really react to
I never knew you could sign. When and how did you learn it?
+TheJanaRina I can’t really. Just basic words but Im not good enough yet to really put together full thoughts. But im working on learning and hopefully will be taking a class on it soon
I'm in Wisconsin. If you come here, I can give you a list of things to do here!
+namewithay Awesome! Thank you!
Hi Christina! I hope you're doing well this week. I've had surgery on my knee to stabilize my knee cap 20 some years ago. I've just recently started to have problems with it hurting. I know that a doctor told me I have an ACL problem but I don't know what it is. I was diagnosed in January with EDS in Madison Wisconsin and I'm curious who the doctor is in Wisconsin that you might see.
+Common Sense I sill definitely get his name for you when I know more! Shoot me an email in a couple weeks if I don’t follow up with you and remind me. Im glad to hear though that the surgery seems to have given you a lot of time. Im always scared of the horror stories of people who just have to keep getting them and have them fail 💜
Do you happen to have any green line/tube clips that you out your tubing in? I have mitochondrial disease and on saline anf d5 infusions daily and would love to get one of them
You're such a sweet strong inspirational warrior!
+stacy klostermann Yes! Okay so I JUST relisted the tube clips in my etsy shop (ChristinaPaintsStuff). I had run out of supplies. But I have a polka dotted mito greet color and then. Lime green zebra print. 😊
Okay!!! Great!! I'm going to go order one or two!! Thank you so much!!! ❤️ ❤️ ❤️
I ordered a lime green Pl polka dotted one AND a lime green zebra also!! Thank you sooo much xoxo
Hello you mentioned you have TMJ in one of your video, I have it what have you found to help? Love watching you
Erin's World my Grandma had TMJ so bad that they ended up burning the nerve that was affecting her TMJ
+Erin's World Yes! So I have a number of vlogs on my TMJD treatment process. I have to travel about 10 hours, so its kind nuts. But this is the first time splinting treatment has ever helped me. So its worth the drive. I wear a day splint all day and I have a special one for the night. I have had treatment on and off since I was a kid, but this time I have an amazing dentist. If you live in the Virginia area let me know, hes great!
is prism common with people who have eds? I cant read without prism and also if I don't have prism I have awful headaches
Have you ever had a paradoxical reaction to a medication? I have one to benzodiazepines which makes sedation hard. If you do how do you handle it/how do you tell a provider? Also do you ever get anxiety with procedures? If so how do you over come it? I've tried using oils, focusing on my breathing, listing to music. It all seems to help leading to the procedure, but as soon as I get into the actual procedure room I become overwhelmed. Just looking for tips! THANK YOU!!!
+Sarah I have definitely had some weird med reactions and sedation issues. I don’t really breathe well with conscious sedation, so I do most procedures without much. I definitely do get anxiety about it. I never used to, but ever since the “allergic” reactions started im always scared of a reaction during a procedure. The best thing I can say is to just breathe. I always as the doctors and nurses beforehand to engage me as much as possible, I tend to freak out more when its quiet. Talking helps me with that. Let them know too if there is something they can give you that works to calm you. Its not uncommon, they usually have something on hand. I usually go med free on that one though since my fear of a reaction to it sorta negates the calming effect 😂 But yeah, I mean, my internal dialogue is usually “okay, this is happening, you are okay, they are in control, if something happens you are in the right place, this will be over soon and then itll just be a memory.” ❤️
I don't know if this is appropriate to ask but I've always been really curious. In the event the dislocating gets too much to handle even with physical therapy, would it be viable to amputate the problem limbs and get prosthetics? Or would that cause more dislocating? All hypothetical, I'm just curious!
+Paola Martinez Its definitely not something I have heard of. That doesn’ mean It never has I suppose. But the condition unfortunately is in your whole body, so something like that would be a huge step with likely little reward. Im sure it would put an immense amount of strain on other joints and cause a pretty bad domino effect. I don’t even think a doctor sould consider amputation in these patients anyway, not unless the limb is truly a danger in some way. Plus we have poor wound healing which would play a factor. But thats an interesting thought
I know what you are going through I have bone on bone under my kneecap.
+Andrea Dickman Ouch! Yup! That’ll do it 😔 Are there any options for you for treatment?
I have a orthopedic appointment on Tuesday.
Hi christina i have another question and im sorry but i look at you for some help lol....have you had issues with your kidneys with the eds pots dysautonomia? I was informed im in stage 3 renal failure but this didnt get this bad until they started treating my pots. Was just curious if this has to do with all these crummy diseases we have.
+Allison Gordon Oh Allison, im so sorry to hear that! No my kidney function is pretty good. We watch it pretty closely because of some of my meds. What are they doing to treat the POTS?
I use a fake tree, because I’m allergic 😂
I am allergic to trees because pollen is my worse reaction so we do a fake tree, but I love real trees, they are so pretty. But my body thinks they should stay outside 😂
+Lanie Wisniewski I hear ya! Luckily im not reactive to pine trees (go figure) but I do react to most flowers. We will just have to appreciate them in nature and not inside 😊