My LIFE Is In Their Hands! I Don't Think They Care To Save My LIFE... Are They Capable?!
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- Äas pĆidĂĄn 9. 09. 2024
- Welcome to Australian CZcams Channel "Ok Aussie" with Dyan & Matt đ
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Follow the day-to-day vlogging antics of Dyan, a female Aussie Autistic & ADHD CZcamsr & Advocate, along with her partner Matt, Willow the Ragdoll Cat, in Western Australia.
Dyan has a life-threatening rare genetic chromosonal condition "22q" or more fully; 22q11.2 Deletion Syndrome and is vlogging as she lives her best life authentically.
In our vlogs you will enjoy; Shopping Hauls, Product Reviews, Resin Art Projects, Home Decorating, GRWM, DITL, Coffee Chats, Comedy, Funny Shorts, Stories, Podcasts, Places We Go, Aussie life.
We have a great future planned. Follow along to see how our life unfolds.
Welcome to Ok Aussie, glad to see you here!.
I fell so bad for you and I hope that thing get better for you. I have a hart problem too and I know how you feel. Iâm here for you if you want to talk. I love you so much
Thank you for your support Lola đđ
I appreciate you connecting with our CZcams community and your comments đ
God bless you mama youâre beautiful and God will take care of you no matter what, trust in Jesus
Thank you sincerely Ktana408 đđđ
Take it one day at a time. It was born w issues n im 42 doc didnât think I graduated high school drive go to community college have a steady job 10 yrs n teachers job off n on 7 yrs. I have cru de chat syndrome
Hi Rebecca đđ
I appreciate that advice and your support.
The world is only slowly learning about the challenges of chromosomal disorders such as your own experience with cri-du-chat syndrome, or my own journey with DiGeorge Syndrome. đ«¶
The World is reaping what it has sowed and there is no way out except that people grow up and take responsibility. I believe it will get worse before there is even a chance to improve. We are living in interesting times indeed:) We in the freedom movement are full of heart but we don't have the numbers to make systemic change.
I live with O2 saturation below 95 except when I am standing and my heart rate is elevated due to hyperadrenergic POTS. I don't seek help anymore because it is not responded to as it is chronic not acute.
You have my empathy with your oedema Dy. Do you have any hope it will resolve itself over time?
I am 70 next year and ageism is piled on top of the other stereotypes sadly but no one is getting a good deal in my opinion. Survival is the mode and it's not good enough is it
Hello Willow đđ much love to you đ
Unfortunately the current situation with the world is very much of its own doing as you articulate. Sadly, we have both been talking and expressing, like your comment, that things are likely to still get far worse before the realisation and accountability for change is forced upon us all.
I would almost prefer to go back to ye olden days!
Finding and actually obtaining the right help, regardless of in the moment with acute, as well as the long term suffering from chronic conditions, is staggeringly unacceptable in Australia. Those that know, know. The education in medical and research with new and emerging conditions is simply not keeping pace.
In regards the oedema, I'm concerned, as this has continued to worsen, rather than even plateau. I can see the medication works to stem the tide, so to speak, immediately worsens if I reduce, however can't afford to increase as desired, as the electrolyte imbalance has knocked the seizure frequency and intensity up a few gears đ€· literally is a Catch22 (the nickname for the condition 22q11.2DS).
I just wish the neurological symptoms would stabilise. It is all very scary to be honest.
Congratulations đ for your upcoming 70th birthday celebration đ next year, it is truly a remarkable milestone with all you bear. We hope we can help you celebrate it and acknowledge your experience, wisdom and support in your comments to our channel đ
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It's been hell. I'm not going to lie, I've been scared many times. Life is short. Soooo short. I cannot function. I'm praying all isn't what it is. This just isn't simple anymore to treat my symptoms that my quality of life is way down. It better go up. I'm not done. â€ïžâ€ïžâ€ïžâ€ïžâ€ïžâ€ïžâ€ïžâ€ïžâ€ïžâ€ïžâ€ïžâ€ïž PS shower or sitting in a car, heart rate 179 beats per minute. Oxygen 84%. Trying a new medication. Always thinking of you. â€ïž