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- Просмотров 18 598
wandering music
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Добавлен 21 янв 2014
Currently a place to document my journey with necrotizing myositis. How it impacts my daily living and what the treatment regimen is. Sprinkled with my personal brand of humor of course :)
Myositis Journey E28: Rituximab Round 3 + Progress
Latest updates and more progress :)
(0:00): Intro
(0:18):Infusion Recaps
(1:25):Improvements
(1:37):Whistling
(2:23):Swallowing
(3:28):Sitting Up
(4:13):Root Cause Theorizing
(6:52): Minecraft
(8:33):Stationary Cycling
(9:30):Locking Wheelchair
(9:50):Clinical Note
(10:59):Heart Rate
(12:14):DISTRACTION!!!
(0:00): Intro
(0:18):Infusion Recaps
(1:25):Improvements
(1:37):Whistling
(2:23):Swallowing
(3:28):Sitting Up
(4:13):Root Cause Theorizing
(6:52): Minecraft
(8:33):Stationary Cycling
(9:30):Locking Wheelchair
(9:50):Clinical Note
(10:59):Heart Rate
(12:14):DISTRACTION!!!
Просмотров: 226
Видео
Myositis Journey E27: More Progress Updates :)
Просмотров 3743 месяца назад
Some more updates on recent improvements. Looks like this is going to be a more regular series as things are slowly moving in the right direction! :) (0:00): Intro (0:19): Wheelchair self-locking (1:30): Car Seatbelts, etc (2:00): Power locks and Door Handle (2:56): Dental Cleaning (6:02): Rolling in Bed (8:51): Attempts to Stand (Safely) (10:12): Happy Mother's Day!
Myositis Journey E26: Updates and Photo Software Preview
Просмотров 3614 месяца назад
More progress updates, and a sneak peek at the Photo Software I'm working on! (0:00): Intro (0:43): Recent Improvements (4:46): Photo Software Sneak Peek (10:28): Conclusion and request for feedback/ideas
Myositis Journey E25: 6 months later, Rituximab refresh
Просмотров 6236 месяцев назад
All the updates in the last 5-6 months, some lows, some less lows, and a positive outlook! It's a bit noisy in the background, the kids had friends over, but no shaky camera this time :) (0:00): Intro (0:58):Decline in September (1:52):Difficult Tasks (2:48):Ask for IVIG in September (3:42):Cough Improvement from Rituximab (5:00):Rescue IVIG Results (5:48):Too Much Pee (6:55):Strength Improveme...
Myositis Journey E24: Rituximab Updates, ER...
Просмотров 691Год назад
Excuse the 'Blair Witch' camera work. I think tripods next time... Updates related to Rituximab infusions as well as an unplanned visit to the ER... (0:00): Intro (0:26): Rituximab Experience (1:36): Rituximab 2nd (2:14): Ankle Pain... (2:56): ER visit (5:50): Rituximab 3rd (6:12): Hives (6:43): Rituximab 4th, HIVES (7:53): Updates/Improvements
Myositis Journey E22: Stagnated? Should we change treatments?
Просмотров 604Год назад
Haven't really made much progress in 10 months of treatment. Some updates and ideas/hopes for maybe a change soon? Asking for prayers (0:00): Intro (0:29): Lung tests and Dr visit (2:03): Access/Pimple (3:21): Hinkedy Pinked Answer (3:43): Cautionary Tale - Hand Sanitizer (5:44): Thankful for so many good friends (6:25): Please pray for me. Mar 29 seeing doctor.
Myositis Journey E21: Medical Updates, Diet & Exercise!
Просмотров 387Год назад
Just an update on how things are going the last month . Tried a new diet, picking up some new exercises, and some overall medical updates. (0:00):Intro (0:23):IVIG updates (1:05):Avoid clotting (3:00):PT/OT updates (4:27):Carnivore Diet (6:55):Hello Kitty & Friends (7:44):Hand Cycle Exercise (10:08):Hinkedy Pinkedy
Myositis Journey E20: Steady as She Goes
Просмотров 432Год назад
Updates from the Lung and G.I. Specialist visits. Updates on coughing and of course the answer to the hinkedy pinkedy! (0:00): Intro (0:18):Hurricane Update (Florida Man) (0:48): Hinkedy Pinkedy (1:08):Lung Specialist (2:19): GI Specialist (4:04):Coughing Subsiding?! (4:49):Sitting Endurance Increasing? (5:38):Wardrobe Malfunction
Myositis Journey E19: Steady Progress and Medical Stuff
Просмотров 604Год назад
Some updates as we continue to see minor improvements. Some of the latest medical tests/procedures I've been doing. (0:00): Intro (0:31): Singing and Blowing Exercise (1:49):Quad Exercises (2:49):Hinkedy Pinkedy (3:49):Outdoor Excursion, ELECTION! (5:00): Lump and Mammogram (8:08): Lung Doctor Visit
Myositis Journey E18: Turning the corner?
Просмотров 795Год назад
My sisters are in town! Much thanks to them for helping me make this video! In this episode we go over safety equipment, comfort equipment, swallowing, miscellaneous injuries and medical updates. (0:00): Intro updates (1:25): Bald spot? (3:16): 2nd opinion from Mayo (4:22): Neck demo (4:34): Infusion Port (5:36): Hink Pink, etc (6:51): Speech Therapy (9:02): Swallow Study (9:57): Seat Cushion (...
Myositis Journey E17: IVIG Re-start & Updates
Просмотров 5672 года назад
IVIG has been restarted. Still progressively getting weaker in some areas, maybe stronger in others Some questions about techniques for physical tasks (0:00):Intro (0:24):Poopy appears (0:52):Vein non-cooperation (2:45):Strength Updates (4:53):How to get out of chairs? (5:39):How to get out of bed? (6:54):How to climb stairs? (7:40):EZ Step demo (9:17):Stand up? Conclusion
Myositis Journey E16: Regression :(
Просмотров 7532 года назад
A quick sharing of the current status. Restarting IVIG after 5.5 months off. (0:00): Intro (0:34): Sandhill Cranes UPDATE! (1:52): Stopping IVIG. results. (4:01): The fall ... new tech! (5:01): New culinary unveiling! (5:42): Demo of rising from a seated position
Musical Interlude 03: 2021 Christmas Interlu-ganza
Просмотров 1762 года назад
Christmas Special. No medical info in this episode :) Not exactly the greatest video filming/editing, but the music is pretty okay... :)
Myositis Journey E15: Improvement + Bubble Tea
Просмотров 2442 года назад
Some new improvements and video evidence? Plus some bubble tea experiences from Florida, and a wildlife encounter! (0:00): Intro (0:43): Lap Harp (0:53): Christmas Lights! (1:21): Medical Updates (2:41): Violin playing? (4:10): Ice Skating (4:54): Golf! (8:46): Sandhill Crane Spectacular!
Myositis Journey E13: Updates, Strength, Boots!
Просмотров 2973 года назад
Myositis Journey E13: Updates, Strength, Boots!
Myositis Journey E12: Medical Updates, Allergies...
Просмотров 3583 года назад
Myositis Journey E12: Medical Updates, Allergies...
Myositis Journey E11: Exercise/Medical Updates, and "SQUIRREL!!!"
Просмотров 3513 года назад
Myositis Journey E11: Exercise/Medical Updates, and "SQUIRREL!!!"
Myositis Journey E10: Exercise & PC & Crypto!
Просмотров 2413 года назад
Myositis Journey E10: Exercise & PC & Crypto!
Myositis Journey E09: Updates and Biopsy!
Просмотров 4753 года назад
Myositis Journey E09: Updates and Biopsy!
RTX 3080 Founders Edition Teardown and Corsair Hydro X Water Block Installation
Просмотров 1,7 тыс.3 года назад
RTX 3080 Founders Edition Teardown and Corsair Hydro X Water Block Installation
Musical Interlude 02: Christmas Music!!!
Просмотров 4433 года назад
Musical Interlude 02: Christmas Music!!!
Myositis Journey E08: Road Trip w/ Philosophy
Просмотров 2253 года назад
Myositis Journey E08: Road Trip w/ Philosophy
Myositis Journey E07: Health Updates and another CAR episode!
Просмотров 2133 года назад
Myositis Journey E07: Health Updates and another CAR episode!
Musical Interlude 01 (not a myositis episode)
Просмотров 2753 года назад
Musical Interlude 01 (not a myositis episode)
Myositis Journey E06: updates and medical plan info
Просмотров 2763 года назад
Myositis Journey E06: updates and medical plan info
Myositis Journey E05: IVIG! and myositis haircuts!
Просмотров 3873 года назад
Myositis Journey E05: IVIG! and myositis haircuts!
Am living with myositis Ossificans
Hearts and prayers! Great to see your progress!
Thanks John. I still can't believe I ran into you at Disney Springs that one time! Hope things are well with you!
Good news!
So far so good :)
LOL at the minecraft hunger.............................. but thanks for the update that you're doing better.
Thanks for the comment! I don't even know how to cook cod in the game. It's amazing what they have learned from sporadic play time at friends' homes.
Glad you're doing better. When I was growing up, my parents would tell me to stop gaming cause I was wasting time. Now my kids are growing up and we're playing games to bond. Minecraft was fun when they're young. These days were playing Overcooked 2 and other face-paced co-op games.
Love Overcooked 2. We recently started trying to get 4 stars in the levels haha.
I think you're dropping goldfish because you're distracted by your tian mi mi. I find it interesting that your food of choice throughout this episode is fish. I would have done the same as your son in that situation.
If only he would quickly prepare dinner in the real world, that would be something :)
Thank you for sharing your journey to diagnosis, Kevin! Be well 🥰
Thank you! Working hard at getting better am I!
Great update! I'm so glad to see things are improving!
Thank you!
Hi, your channel just popped up on my home page, I guess that’s what it’s called. I was originally diagnosed, back in 2002, with Polymyositis by a local dr but Mayo said IBM. Then NIH said PM and Dr Ottis at University of Pittsburgh said IBM and a skin biopsy showed DM. Now it’s thought I have all 3. I’ve done 8 study meds along with the usual IVIG, methotrexate and other useless meds. Prednisone for over 20 years now. I’m 57 now and in a wheelchair. I fell and shattered my femur 3 years ago and haven’t walked since. I can’t roll a wheelchair but I have a Jazzy air. I haven’t given up standing yet. I can stand in the pool. My hamstrings are strong enough but quads and hip flexors are a joke. Trying to follow a study done a few years ago that says I need to eat 1gm of protein per 1 kilo of body weight, vitamin D and testosterone where it should be and creatine 10gm per day. 100 gm of Protein is tough. Plus some exercise, of course. Supposedly this averaged a 38% increase in muscle strength 🤷🏼♂️. It’s worth a shot. I’ll keep watching, take care.
Wow. Thanks for sharing! 20 years is a long time. With necrotizing myositis the decline was extremely rapid for me, but for the last 6 months I've had steady improvement. (Albeit extremely slow). Here is hoping we both get back to walking in the near future! 🙏
Amen to that brother. I was very athletic with bigger muscles so it’s taken a while
Kevin you're looking good man!
I try I try :)
Thx for the update.
Any time!
Just dropping a comment to say Hi and hope you had a chance to celebrate mother's day.
Thanks. Our celebration was mostly a nap for Mom :). Been so crazy lately. Hope your family had a good Mother's Day!
Been watching your videos, as I was jus given the news I have this thing. Thank you for all of them… they’re insightful and educational but also funny and refreshing. Surprised at the very very little content is out there about this, but I’m glad I found your channel 😊
Thank you so much for your kind words. I hope your doctors find the right combination of meds for you and your insurance doesn't give you hassles. One thing I've learned through all this is that we really do have to be our own advocates. Nobody cares more about you than you. Good luck to you
May God heal you and grant you health. If you never mind tell me how old was you when you got myositis
Hi there. thank you for your kind message. I was 43 i think? Somewhere in early 40's anyway.
Thank you for sharing. I wish you love and strength in your journey
Thank you so much!
Maybe you should consider some physio to get moving again, since you have this improvement. It helped me to accelerate my recovery. Some great resources online too!
Glad to see you doing well.
Thanks Al! Hope things are well with you!
Please forgive me a few answered this in your video. Have you considered facial recognition? Also being able to search by something in the photo
A version of facial recognition is coming. The server already supports finding and mapping faces when the photos are imported, just haven't quite figured out how I want to design the user experience around it. :)
Hello. First, i wish you all the best. I also got diagnosed with Mayopathy, but waiting to tind out which mayopathy is. I want to ask you a few questions, is there any way i can email you?
myositisjourney@gmail.com
What insurance do you use? I’m having a hard time v choosing one
Great to hear!
Can I count on you to contribute to my open source photo management solution?
@@wanderingmusic38 yes!
Glad to see you doing better again. Do you ever find you'd like to search for images by concepts/words? Seems like an AI classification approach might be useful.
AI is definitely something to investigate. Not part of the initial design. Maybe a plug-in architecture to allow metadata updates generically?
Good morning, Seems like the right combination of treatments is accurate per your update. You are looking much better than the last video, and im very glad to see that! You are an inspiration for those who are dealing with myopathy illnesses such as myself. I'm praying for your healing, brother. Appreciate you for sharing your videos.
come back with an update.
I'll be posting one soon. Got a lot to catch you all up on!
a pokemon go
Gotta catch 'em all!
omg! that squirel!
hey Kevin. my blood test for ck is 1,166 and im starting to feel like i have myositis. thank you for telling your story.
How are you doing? We haven’t seen an update recently. Did RTX work?
Thank you! Did ivig helped in your case?
Hey what myositis do you have?
Yes, I too would like to knew which myositis you have because my husband has DM.
@@paintersqueen my wife got JDM(child type of myositis) and I am worried about children will they have that disease,because autoimmune can be hereditary especially if both of parents has autoimmune diseases
I have tested positive for the SRP antibody, which gave me necrotizing myositis diagnosis
Hello brother. I'm a 25 year old male with necrotizing myositis. I was diagnosed 7.5 years ago. No treatment is helping me over the years. Is there any new treatments that you've been on?
@@MrStealYourBiatch Hi there. Wow, 25yrs old, that's rough. What works for me is combination of IVIG and Rituximab (I think. It's early yet, but this combination seems promising for me)
I was diagnosed with PM a little over a year ago and some of the problems I have with cars is getting in/out and most of the times don't have the strength to push down on my seat belt to click it closed. Not sure if its the angle or because the part thats attached to the seat sinks in and moves. Its very frustrating.
Oh all the little things that we struggle with that are difficult to explain. Seatbelts, and door locks i haven't done in quite some time.
Sending prayers 🙏🙏🙏 you are a fighter. I admire you for being able to share your experiences with us despite the challenges you are facing. Lets hang on. Everyday is a day to getting better. My thoughts and prayers are with you ❤
I want to ask something
Can I say, fantastic piano playing first. I play piano myself and I have lost muscle ability to elongate my right arm. I’ve noticed my body will shift to the side the compensate the lack of movement from my shoulder. I struggle daily with loss of strength and drop a lot of things. And struggle to put my arms above a certain height. Right arm is affected more than the other shoulder. As Im right dominate hand. I have other members of my family that have PM and I get to be assessed soon for more thorough testing.
I also started with weakness on the right side. Thanks for the compliment!
My husband was diagnosed with Inclusion Body Myositis 3 weeks ago. We have been on the Carnivore diet for over a hundred days now, heavy on the keto side of Carnivore, and he's doing great. The doctors that talk about Carnivore encourage ppl to continue for 3 months before you give up. Broth really helps, chicken and beef broth. Do you think you'd give it a try again?
If Ritmax doesn't work in 6 to 9 months, you should try clinical trials.
Hello sir, I hope you are doing well. My question is did you have any type of muscle skeletal pain? like real pain all over?
No pain for me due to myositis. Only pain on the few occasions where I fell. (Fall injury pain) And the one instance of severe ankle pain for a weekend that is still a mystery.
I’m newly diagnosed with IBM and I’ve learned so much from your videos. Thanks so much for taking the time and for keeping us informed. Please take good care - I look forward to seeing your progress in the next one 😊
Sending prayers and healing in Jesus name
thank you :)
Sending best wishes buddy! Hope we start seeing some of those improvements!
Hi - do you have any recent updates? I have been going through very similar than you. Keen to see how you are getting on …
@@wanderingmusic38 I was lucky, I found some great doctors here (UK) and I’ve been making a good recovery. Hang in there. I remember the tiny wins (just like yours), they led to bigger and bigger wins…it was the start of a recovery.
Hi, wishing you well on your rode to recovery. Did/do you experience any muscle twitching?
no twitching, just rapid weakening and loss of muscle mass.
Daikin ID🤣🤣🤣
if only she heard something cool, like dragon, but nope. Daikons all the way...
Ahh... daikon... Daikon Dave. Daikon standards. We had a whole team dedicated to daikon. Hope Wednesday works out. All the best.
haha. yes all about the daikons!
So you are a daikon specialist....
Thank you for the update Kevin. Praying.
Thank you!
Hang in there. I went through what you are going through. A combination of steroids, chemo (cyclophosphamide), IVIG and Rituximab did the trick.. thoughts and prayers.
Praying for you Kevin. Thanks for the update.
Thank you!
Praying for you.