My First Mayo Clinic Appointments! *Health Update*
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- เผยแพร่เมื่อ 23 ต.ค. 2024
- The long awaited Mayo update! I think this could be the start of something great and hopefully gets me feeling better!
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Crazy, someone needs to be held accountable for placing tube wrong, at this point I would request a senior specialist when and if it happens again. Its negligence .
Finally you’re getting a team in place who are actually listening to you! I’ve been praying for that for you for so long! xxxxxxxxxxxxxxxxxx
I'm so glad you're getting things figured out many many prayers for you from another chronic illness friend, I haven't decided whether I want to do a vlog just to show people my life and be honest and get it out there I don't know what do you think? Again love from me to you
If you’ve ever seen Once Upon A Time, the actress who played Regina had some good advice. “You are where you need to be, just take a deep breath.” The quote by Ambrose Redmoon which was made famous in The Princess Diaries would also be fitting for you, Mickey. “Courage is not the absence of fear, but rather the judgement that something else is more important than fear. The brave may not live forever but the cautious do not live at all.” You are so strong and we all love you very much.
Hello from a guy who lives in Rochester MN and grew up going to the Mayo clinic and having surgery's done at Mayo clinic. It's a excellent facility and beautiful too!!
I absolutely loved the Mayo Clinic in Rochester Minnesota and how efficient they were with paperwork and blood work results were in the same day. My favorite room was the sunroom I think it was in the lobby area but I was there in 2012
I'm glad you're getting things figured out! I actually have mitochondrial disease and glycogen storage disease, so that's funny that you're going to be tested for those!
Completely random but that is by FAR my favorite floor in Mayo Clinic, as a volunteer there I spend every Tuesday delivering stuff to it. It is absolutely stunning!
Prayers that this is the Care Team that will get you further answers. I actually was accepted to Mayo Clinic in Rochester for a GI consultation. We live roughly 5 hours away and will be leaving on Tuesday for my appointment on Wednesday morning at 7:20! Car rides are hard for me as well and since we are further away they to,d me to plan on staying at least 4-7 business days if not longer. I’m praying for answers as well. I haven’t been able to eat by mouth in almost a year and have had an NJ since plus have to run a liter of saline 5 days a week through my port. None of the local Doctors feel comfortable placing my straight J with all my medical issues. How did you like the GI Team? Who was your Doctor assigned to your case? I hope they can bring us both further help. Sending you prayers and big hugs 🤗!
Hi Mickey! You are so inspirational to me❤️I have type 3 Eds and you have helped me learn to embrace my disease!! Thank for all the help and keep doing what your doing
I'm sooo happy you're back!!!! I ❤ you're videos!!!!
So glad you had a week of appointments! And that they set you up with a comprehensive care appointment so they can have someone overseeing and scheduling your appointments. I had a great doc for that And she said everything was important and asked how long I could stay ! We ended up there for 2.5 weeks =/ from CA. But I was with my best friend and she made it bearable. She also cried with me when I got my EDS dx! And if you have any issues at all with your docs not listening ask patient affairs to let you see someone else! I did that and it changed everything. In a great way. Hope You can see Dr. Dehly! If he is still there... He took over for Dr. Kirmani who was amazing but moves back home to take care of his mom.. But he told us Dr. Dehl y was very competent and would do what he was doing to help us. You may be able to get a PM&R doctor too. I got one and my joints are getting better because of it. Their PT is great too. Don't be afraid to ask questions or be a "checker," cause I got to have appointments way earlier than scheduled cause people did not show up. So if you're already going to be there you just need to have r hours between appointments I think to wait. Anyway, I am praying for you and my trip there got me so many answers and I hope you get more help with your tube as well! I will likely be getting a GJ soon and I am scared! But I know I need it cause I can't keep weight on or muscle or fat and my GP is so bad now that it seems like the only feasible option. Scared, but hopefully I can get it done so everything bypasses my stomach and I will eat if/when I can and have fluids and soft stuff. But it's getting harder by the day!. Hope Sydney is doing okay and that her training is going well! So glad you finally got in and you are getting the help you need. 💜💜
May I ask do u have gastoperisis sorry for spelling, I’m fighting a brain tumour in 🇨🇦, basically alone, I lost 70lbs in 7 months, my prayers w u all, be careful GMO and Vaccines effect our gut.. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻😍🤪🇨🇦❤️
I hope you find answers at Mayo. 🤗
I love the beauty and art of Mayo Clinic. I never had an appointment in Endocrinology so didn’t see the awesome stuff on that floor. If i go back, I’ll have to remember to check it out. It’s frustrating to have to drive back and forth just to be told you are being scheduled fo more appointments, sitting as a “checker” for several hours, and not getting in. It is a 10.5 hour drive for me, so I have to try and cram as much in during a trip as possible. But the shuttle system to and from the hotels is wonderful. Hard part was living in a hotel for 10 days at a time. Driving back and forth like you have to is also frustrating.
I’m going to a GI specialist. I can’t keep food or drinks down either. I just got a bunch of blood tests done last week. Praying for you. Your videos always help me stay positive
I LOVE the mayo clinic. I have been twice now for a total of about 6 appointments with three more scheduled. They are AMAZING. at least the clinic in Jacksonville. I live 7 hours away so i fly down. In the first appointment they had already done more for me than 10 years of seeing doctors. Plus they finally diagnosed me.
Yay for progress. I hope they get you feeling better.
You are so strong. Prayers for you that these new drs. can find answers for you. Stay strong, stay positive, keep going.
Mayo is the BEST!!
I been going to Florida Mayo 2 years. Beautiful place, great doctor's 🎉
You are so brave! I don't think I could ever do that. I'll he praying for you, your family and your doctor's to find answers for you. Much love to you
I'm pretty sure that the Mayo clinic in Rochester was the hospital my sister had her heart surgery at. The day of her surgery, our car also started on fire in the parking lot. It's a massive day in my entire family's mind.
Ive been reloading my feed for the past hour waiting for this!!
You are sooo strong, my gosh I already get tired if I have 1 appointment in my hospital and that hospital is 15 minutes from my house. I hope you get some answers and good care there I will hope with you😊.
I had SUCH an amazing experience with the mayo and i'm hoping you find the answers you need! I was also in the same beautiful naturistic waiting room as you!
I live in MN too!
I’ve been going to Mayo on and off for years. It was so weird seeing you there!! Wish we would run into each other 😆
My son has had manometry and many many other tests and was diagnosed with Chronic Pseudo Intestinal Obstruction which you mentioned. He is doing really well and just went off to college. He has a Mic-Key that goes to his colon (usual it goes via your appendix but he didn't have one so they did a neoappendicostomy and he just flushes it with saline, toglycerine and Castile. If you have any questions (even graphic) Ben is totally cool sharing. He is your age.
I recognize the wall and the waiting room from when I was there!! It's a great place!!!!!! The wating room was so pretty!!
I'm here at Mayo right now and it is so beautiful here!!
How can you look so good, be so cheerful and have such difficulties with your health all at the same time? I feel so sad, such a nice girl like you has so many health problems and is going through this! I can only say, that I have a very good feeling, that this new Doctor is going to come up with some answers for you!! And, I told you this before, there are many researchers working on these problems, around the world and will soon have have cures and better treatments for them. So keep hanging in there and being strong like you are! And how is the online College going? Take care Supergirl:) Kev. p.s. you hide the cape and the big S on your chest pretty good:):)
Oh my goodness, you are so lovely. And extremely intelligent...you would make a great doctor!!
So happy you got into Mayo. I’m on my 7-8th rejection from them.
My prayers are with you. Keep faith alive.
I love mayo clinic I have been going there my whole life since I was diagnosed with mitochondrial disease I have been going there for tests to make sure nothing has changed in my health
Omg I lived in Minnesota !!!! I just moved away to TN in June tho :( I wish I would’ve known you lived in MN before I moved so I coudlve meet you 😭
I’ve had to go to the GI!!! I know my problems aren’t that bad but still, just wanted to say that!!!!
I hope you get this tube business figured out. Love and prayers
Also my parents worked at Mayo Clinic hehe isn’t so clean and pretty ugh I miss it literally best hospital out there
Have they looked at your superior mesenteric artery? It branches off of the abdominal aorta.
love you, love you , love you! i'm so glad you're getting answers ~
Ily you and I love watching your Instagram lives so much
Prayers for answers...keep smiling♥️💋👍🏻
You are amazing l love your channel and hope you are ok with everything that you do 😀
Wow ur amazing Mickey
Ive been watching your videos for a while and I have had health issues for over a decade. I just go a probable diagnosis of hEDS and my doctor is currently trying to get me an appointment with the MAYO clinic! Im on NC so it's quite a trip for us! Any tips for the MAYO clinic?
I really hope you find answers soon. 😊😊😊
You gotta put Sidney in the opening ❤️🐶
Do you need to pay for the appointment before seeing the doc or after u arrive ?
Good so far no has disliked this it makes me very sad and upset when I see ANYONE dislike videos on this channel 😓
I’m so sorry my friend. I love you sister.
I only live an hour a away from Rochester
Praying for you.
why were you denied an appointment so many times?
PLEASE READ my brother had some of the same problems and he went gluten free dairy free pretty much just SUPER SUPER healthy and non of the doctors believed that it would help him and they all said he would never be in a regular class room and would never basically lube on his own and all of this stuff and believe it or not it worked and within a year he got his G tube out and now my brother is 17yrs old in high school excelling great grades has a great job he can drive now and he feels so so much better. So maybe try your diet believe it or not it really helps. Because your body has everything it needs to help itself it just needs the right nutrients. I’m telling you im not crazy. Love you hope this helps or at least try it❤️❤️
Live sorry
Issue being is that EDS is a genetic issue that cannot be fixed by diet. It is lifelong
Hey hope u get this all figured out
The struggle is real
Anyone ever tell you you look a bit like Sophie from Sophie's Life? She has EDS with GI issues too!
Mayo clinic has one of the nicest waiting rooms so beautiful
best youtuber ever!!!
For me I never get anything solved when I have specialist appointment
i live in rochester (minnesota) wowowowowowowo
Me too
I love you!!!!!❤️🧡💛💚💙💜💞💓💗💖💘💕💕💕💕💕💕SOOOOOOO MUCH
So sorry i am late but your so pretty and beautiful just thought you should know that xxxx
😊❤️ Adorable ❤️😊
God bless you...
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Hey
Second
ILove.You.Beautiful. Pretty
for aomeone with stability issues, CROCS are the absolute worse footwear for you.
First like
I feel for you, for profit care doesn’t care about finances, hence “hey, u need to see this specialist, every other idea under sun... “$$$$.. that’s crazy amount of testing.. please www.ratemd.com read comments on top ten drs in ur area, u can find the real heroes, by hearing others stories.. in Canada universal care, is a blessing, however, we need comprehensive pharmaceutical plan, cause prescriptions bankrupted us ... prayers u get ur answers.
Mayo Clinic is a non-profit
First
"everything is so beautiful"... it's amazing what money can buy. It's disconcerting how they made the decision to spend money on non-essentials and not on needed research and patient care or even give the staff a raise. Can't eat marble....
"Just because you can doesn't mean you should."
However, being in a beutiful place makes one feel more calm than somewhere with grey walls and grey floors.
Mayo Clinic is a non-profit hospital, they spend millions on research but the area she showed was a pediatric floor... they built it so children would still feel like children... Most of the other floors and basic hospital waiting areas or basic hospital rooms. Mayo Clinic is CURRENTLY the best hospital in the United States... They are an amazing hospital and they literally perform medical miracles every day. Mayo Clinic pays their employees quite well, I currently have 3 family members working for the Mayo Clinic in Rochester.. trust me none of us are struggling.
Why is your channel name life with stripes? I'm so curious
Because EDS is considered a relatively rare disorder, people with rare diseases are called Zebras.
@@xanaharris7579 thank you :) I never knew that