Omg I'm exactly the same with my hearing. I always have the tv subtitled and it's not that I'm not hearing it but just that I can't figure out what is being said. It's always nice to find other who deal with similar things. It makes these Illnesses less isolating so thank you. I really appreciate your videos xxxx
+Jessica Gibson Im sorry you have this issue too, but you are so right, its nice to know you aren't alone. I will definitely keep you all updated on what kind of testing/therapy we do for it moving forward. Hopefully that will be helpful for you as well.
Love this relaxed and positive style :) I have EDS as well and all the complications are super difficult to live with. Go you! Do you enjoy reading much? If so I'm a fellow EDS zebra who talks about my illness and books I have read. ❤️💕
+Hannah Hodgson I absolutely love reading! My vision unfortunately is pretty affected so I can't sit and read all day as I wish I could. But aim getting there with practice. My cousin Tayla is a spoonie who is super super into reading. Mostly YA. She just started vlogging. Her channel is "Bear the Unbearable"
You are an inspiration!!! I love your positive outlook despite your struggles and limitations. You are so brave and courageous in the face of all you have to deal with.
Your faces, while the plane was overhead, were adorable! I'm so glad that they finally got your port to work again. I'd really love it if you made a video just about your experiences with the varieties of CBD oils. I'm thinking I might try one and I really trust your opinion. Also, the sheer amount of work you have to go through to get into the car is crazy! Love and spoons!
omg i took my friends to phantom of the opera for the first time in nyc in may and at the end of the month i'm seeing the SECOND EVER american show of love never dies (the sequel) and I'M SO EXCITED AHHHH!! 😱 ALSO i've been putting off a similar hearing issue for a while now but i finally let my primary refer me to audiology after a nasty infection made me feel completely deaf in one ear. lip reading is a lifesaver. my grandma taught me a tip that i'm going to pass along to you and anyone else with hearing loss/issues: when you get tired of asking "what?" or "huh?" just smile and say "mmm" in a neutral, unbiased way, if it's important, they'll ask again later! 😂 okay sorry for the super long comment this time, wishing you the best with this stubborn port and symptoms 💕🥄
+agirlisariot I like it! I think Ill be saying a lot of "mmms" 😊. Thats awesome you are going to see Love Never Dies. You know, I have really mixed feelings about that show hahaha im a die hard Phantom fan and just don't know how I feel about LND. I think you either love it or you hate it haha The tour is coming to us as well and im kinda debating it
I have EDS and all the sorts that comes with it, but I'm also Autistic and have ADHD so I have Central Auditory Processing Disorder too! I have subtitles on EVERYTHING! I empathise, although I don't have the issue of neck/body turning. That seatbelt pillow looks so good! I need one!
+MK 3MK29A Thank God for subtitles! One of these days I have to go and subtitle all of my videos. I wish it wasn't so time consuming. I feel bad that they don't have them
I have the same issue with my hearing and issues with my vision too. I've literally had a prescription change very noticeable in less than a month. It's so, so very frustrating.
I have to take Prednisone and Benadryl and I feel the same way...soooo tired and yet like I could vibrate through the floor. Glad they got the port figured out.
I have CAPD and double vision too.... What I've seen though is that there isn't much they can do to help with it besides helping with your pronunciation, learning to lip read and guess based on context, and to encourage your friends to be in your life of sight when talking. I've been trying to convince others around me to learn ASL because it's sometimes easier even with double vision to comprehend what they are saying, and on videos I have closed captions on if offered.
+Crimson Rose I have actually been learning ASL lately! I don't know much yet, but it just helps me to feel less panicked to know that I could potentially communicate in another way. But you are right, if nobody around you knows it then its not exactly that helpful
Aw, Christina! That SUCKS about your port! And periphals in the hand are THE WORST! The kept having to stick me in the hand during my last hospitalization and I literally couldn't do anything with my hand cause then my vein would blow. 😒 So they switched to the wrist and the vein collapsed and they tried the inner elbow and my dislocations made the catheter dislodge. Stupid EDS veins and peripheral IVs. Be careful with all those port sticks tho! First time a nurse tried to access my port she stick me 5 times! Kept missing the port but was convinced that something was wrong, come to find out she just wasn't knowledgeable. All those sticks did not help my port tho. 😣 Keep safe!
+Bethany H EDS veins are the worst! For me they are so deceptive since Im so pale. You can very plainly see them, but will instantly roll, collapse, or blow.
I'm seeing Phantom of the Opera when it finally comes to Seattle! So excited! Musicals are so fun. I am sorry your veins are giving you issues too. That seems to be such a common eds thing. You're brave for removing your own IV. Do you take steroids by any chance? After about a year of long term steroid use my hearing started to get a lot worse...not sure if it's related or totally coincidental, but my hearing definitely went downhill after that.
+Kristina Marie The tour is so fantastic! You are going to love it! It may have even been better than when I saw it on Broadway. Interesting about the steroids. Yes, I am on long term steroids. But then again, they said my ears were totally fine. Its just my brain that isn't interpreting what I am hearing. Weird
Christina Doherty I'm so glad you got it all worked out! Is there going to get an update on whether the knee brace helped the bruising in your other leg soon?
I don't hear of many people with it. I have APD and I might as well be totally deaf sometimes when it comes to communication etc. Whenever I say I have it people have no clue so I just say I'm hard of hearing even though it is my brain not my ears which is the issue lol
Yup, the HIPPA law make filming or taking photos in a hospital without permission of the hospital and getting signed waivers and all sorts of legal documentation strictly illegal. Its not just hospital policy or a local law, but Federal Law all connected up under the HIPPA privacy policies. I know, people take pictures of giving birth and babies all the time but that is allowed in most cases as the filming/photos are only done in a private area and only with the patient and/or family of the patient and even then you have to sign stuff and usually cannot film or take photos in public areas like hallways and so on. Since your port flushes fine and they confirmed that the catheter is in the right place I am surprised that they did not allow you to at least have your fluids. My daughter's port gets fibrin blocks on a regular basis that often take multiple TPA installations or a catheter replacement but we are most always allowed to continue with fluids as long as the catheter has not moved and the line still flushes.
+Pam Duncan Interesting! Thanks for the info. I have definitely had different places enforce those rules differently. I usually ask and a lot of places have said it was fine. Definitely good to know the law. Im sorry your daughter has to deal with this so often. What a pain! Im glad they usually allow her to continue use though. Its hard feeling stuck without a form of access
What kind of brace was that you put on before getting into car? Is it for back or hips? With how much you have to do to get car ready, I'm surprised you havent used up all your spoons, and don't fall asleep in your car seat, like a baby. Lol
Rebecca McCabe if you need inspiration, look at Annika Victoria on RU-vid as well. She's not takiyasu's arthritis and watch she manages is quite impressive
Rebecca McCabe It is important to learn your limits when working. As spoons are usually in short supply, you may feel the strain of pushing yourself too far. Perhaps start off with reduced work hours and build up to what you can manage. A good boss is key to this. They need to understand that your needs may change over time. Always listen to your body. Best of luck.
+Rebecca McCabe I wish I did. Unfortunately I have never been able to work, so I'm really glad others are jumping in in the comments. I guess my only advice is , as with anything in life, its better to try and fail than to have never tried at all. 💕
wait, you can only leave an iv in for 3 days? last time i was in hospital i had the same iv for the whole six days i was there they only removed it when i was checked out
+Lucy Roman When you are in a hospital setting they have different rules. They can change the dressing for you and keep it more sterile and stuff. But the rule for home use is 3 days 💕
+Amy Coronakes Correct. So I can't bend/turn/twist my head and neck. I can very slightly bend forward in my mid back, but we are talking fractions of an inch. No twisting. Pretty much all of my mobility comes from bending at my hips.
Hand IV's are agony. I have auditory processing disorder...unfortunately I am unable to do brain training for it as I'm too sick from ME...the ME makes it worse. I've had it all my life but the problems are intense since getting ME 7 years ago...I have to tell people I'm hard of hearing as no one understands APD. 😂
Can you FB me about Mast Cell? We are friends on facebook. I had a very serious allergic reaction tonight and we have no idea why. I had a positive ANA. I plan to call rhumatology in the AM.
