Ive found so far every male dr Ive seen at that hospital is arrogant.
@OkAussieLife14 сағат бұрын
Absolutely ❤️ one day we will get rid of the rubbish that can end in people losing their life. We have a little way to go with this boys club stuff. It's actually getting to be kind of second hand embarrassment I feel with them. Patients know themselves & that is forgotten. Not to mention some of us are smart. They hate that. Several nurses said Matt is intimidating them with his knowledge. Lol. I'm sure that wasn't easy. But having a rare syndrome, it's common for the person & family to know more than doctors about it. My heart know is added to the list & my Dystonia & Tourette's reflected in the EEG so I feel we got what we needed but funnily enough we still have to go back for the UTI. The nurses were shaking their heads as that's what I went for. So outpatient infection diseases & urology. I loved my chats with the awesome nurses though. Also the EEG scientist lady. A few on the spectrum peeps. Fascinating. Doctors uuurrghhg. I can't deal with their immature attitude. Need for power. Lots of love Dy xxx ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
@JustMeBeingReal19 сағат бұрын
🥰💖💙😭🙏🏻
@OkAussieLife18 сағат бұрын
Thanks for your support Tina 🙏💕
@nirmalamalla671119 сағат бұрын
❤❤
@OkAussieLife18 сағат бұрын
Thanks for your support Nirmala 👋💕🙏
@JustMeBeingReal19 сағат бұрын
🥰🥰🙏🏻
@OkAussieLife18 сағат бұрын
Thank you Tina 👋💕😊
@JustMeBeingReal19 сағат бұрын
🥰🥰🥰🙏🏻🙏🏻🙏🏻🙏🏻🤣🤣
@OkAussieLife18 сағат бұрын
Thanks Tina 👋💕😁
@karamason760519 сағат бұрын
With all the Irologies and the Irateys you think there should be an Idonknowolgy to go along withit all. I'm so sorry that you have to go through all this I know how hard it can be. Two years ago my weight plummeted to 32 kgs and I am 5 foot 3 inches. Well anyway no-one could give me or my husband any soe atrt of reason as to why. And even though I would eat a good balanced diet I was also malnourished. Come to find out 9 months later that my Pancreas had decided to go on a little holiday without jhe courtesy of at least giving me the heads up. Damn Pancreas it has taken 2 yrs of specialized diet littlwe exercise and I finally have reached my goal of 58kgs..... yay yay 🎉🎉🎉🎉. Because of that my body shut down and I have develped problems that never existed before. My heart rate ❤❤ hands around the 125 bpm resting and if I get up from sitting or laying it goes up roughly to 150 - 180 bpm. I tell you it feels like I've run a marathon. If I could give you some of my beats we could average out as normal what ever that is...... LOL😅😅 anyway enough about me. I'm still sending BIG HUGS and praying for you both. Hang in there!!!!!!! ❤ from Karalyn Laurette from Perth Western Australia 🎉😂❤😢😮😮
@OkAussieLife19 сағат бұрын
Hey Kara 👋💕 Would love to share some beats so we could both average our heart rate out together 😜 seems the most sensible medical suggestion I've been provided with today actually 😂 Thanks for sharing a little of your own journey 💖
@Simgra-t4s20 сағат бұрын
It’s not just WA it’s the same in Victoria
@OkAussieLife19 сағат бұрын
Hey Simgra 👋💕 Yup! Seems Australia wide tbh.
@karamason760522 сағат бұрын
Oh Dyan you and Matt are absolutely allowed to have any size melt down at this stage. I was in hospital for nearly 10 weeks at the same hospital you are in now , in 2023. And man I agree 100 % of your struggles to be heard. Praying for you both and sending big HUGS from Karalyn Laurette from Perth Western Australia ❤😊
@OkAussieLife20 сағат бұрын
Hey Karalyn 👋💕 Thank you so much for your acknowledgement and support 🙏 much appreciated 👍
@karamason7605Күн бұрын
Love it 😂😅❤
@OkAussieLifeКүн бұрын
Good to have a chuckle Kara 😀💖👋
@emilyblevans4545Күн бұрын
So funny
@OkAussieLifeКүн бұрын
Hey Emily 👋💕 Can't lose our humour even whilst going through this.💖
@ashleylawson6238Күн бұрын
Send prayers.
@OkAussieLifeКүн бұрын
Thanks for the prayers of support Ashley 🙏💕
@JustMeBeingRealКүн бұрын
💖💖💖🩵🩵🩵🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
@OkAussieLifeКүн бұрын
Thanks Tina 👋💕
@JustMeBeingRealКүн бұрын
Oh no they put me on that medication that you're explaining about that starts with the F I think I can't pronounce it and it made it worse it makes your kidneys work like 100 times more than it should and it's actually for men with prostate problems but they give it to us women too and it is horrible and it makes you pee like something awful constantly and it's so painful it is oh my God and especially with me with the third kidney rough I will never take that medication ever again in my lifetime and I feel her pain God makes me cry with her I have been there done that will never do that again prayers are going out for you I'm trying to catch up on all your videos much love and prayers to you and y'all have always been in my thoughts and prayers constantly and she is so lucky to have you Matt very lucky and you're lucky to have her as well I just wish I had your family with your sons and stuff not sure why or what happened there but I really hope that soon before it's too late that your son's and grandbabies you know start coming around and and enjoy y'all and get the blessings like we do just by being a part of y'all's precious lives through y'all's KZbin and Tik Tok and Instagram and Facebook videos and it's like we've all became a big family of each other's and they're really missing out and you are amazing awesome loving people this is even saying all this has got me crying and listen to her it's so much pain because I know what she's going through on top of all the other health issues and I'm so sorry y'all are having to deal with all this but y'all are always in my thoughts and prayers and much love to you all God bless😭😭😭😭💖🩵💖🩵💖🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
@OkAussieLifeКүн бұрын
Thanks so truly much Tina for your caring support 🙏🩷👋💖
@JustMeBeingRealКүн бұрын
@OkAussieLife Yaw are very welcome sweethearts 💖🩵🥰🙏🏻
@JustMeBeingRealКүн бұрын
So you even have to bring your own medications in Tennessee that is a No-No if they find out you have your own medications they take them from you and put them in a safe then you just have to suffer cuz you're used to taking them on your time at home 4 to 6 hours I take them every 3 to 5 hours especially to control my pain levels and my colon issues so I understand the frustration but they don't even allow you to take a shower there either like what that is insane and no TV no Wi-fi they don't feed your guests and build your the patient's insurance like it's all insane they need to look into Tennessee hospital rules especially to allow your patients to have TV Wi-Fi and your guest a breakfast lunch dinner tray Bill to your patients insurance and to also allow your guests to take a shower like what is wrong with those people it's not that hard to take care of your patients and along with their guests prayers going up for you how much love sweethearts 😢😭😭😭🩵💖🩵💖🩵💖🙏🏻🙏🏻🙏🏻🙏🏻
@OkAussieLifeКүн бұрын
Hey Tina 👋💕 BYO (Bring Your Own) Healthcare, goes along with DIY (Do It Yourself) Healthcare unfortunately. They will lock up the meds to control them, use them, in their timetable. Unfortunately, the hospital pharmacy just doesn't stock a lot of what Dyan has been prescribed! 💖
@JustMeBeingRealКүн бұрын
I'm still stunned that you'll have to pay for parking daily and for TV and internet like that is crazy no that's just over insane the prayers going up for y'all much love support respect and God bless hope you all get to go home soon and I hope you get all your answers and find out what's going on and get better😭😭😭😭🩵💖🩵💖🩵💖🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
@OkAussieLifeКүн бұрын
Sadly this summarises our local public health system, they make profit out of healthcare. For patients on pensions, there is no choices available.
@JustMeBeingRealКүн бұрын
I like the hospital socks too I always take them home with me😂😂😂😂
@OkAussieLifeКүн бұрын
These are now a favourite, and hope to get a few pairs to take home 😁
@JustMeBeingRealКүн бұрын
I have three working kidneys that overloads my bladder I take nitrofurantoin which is macrobid 100 mg a night since I was 19 and I'll be 52 in june but for the last six or seven years I stopped taking it every night and started taking it only when I feel a bladder or kidney infection coming along and then I take it once in the morning and once at night because I can't take Cipro especially in the summertime because it will burn you up like just a second in the Sun and your burnt to a crisp like a lobster but because I was on it since I was 19 it's a to keep the bacteria out of my bladder and out of my kidneys because of my third kidney and it overloads my bladder and sometimes I have to go be catheterized because my bladder been so overloaded by the third kidney and I also sometimes have to wear the catheter home at times for a day or two but thank God that hasn't happened in a year or two cuz like I said I tried to keep it under controlled and all I drink is water so plus I have psoriasis plus I have a severe chronic ulcerative colitis pictures of inflammatory bowel disease and with my psoriasis also is an autoimmune system tackers plus I've gained weight on all the steroids that they put me on the prednisone I'm used to being 110 115 my whole life and now I'm pushing 240 and it's rough but anyway I know how painful the kidney infections and the bladder infections can be but maybe if they could put you on I take over the counter Azo tabs for the pain the urinary pain of the bladder in the kidneys mainly in the bladder that turns your pee orange and it really really helps and maybe they can either try you on Cipro or Macrobid nitrofurantoin which are two very good bacterial infection antibiotics for your kidneys and bladder but I hope they get everything squared away with y'all and ask him to turn the air down so you won't freeze cuz I know that alone is Harsh on your body and your bones the coldness especially at our ages the prayers going up for y'all 😭😭😭🩵💖🙏🏻🙏🏻🙏🏻
@OkAussieLifeКүн бұрын
Hey Tina 👋💕 The use of preventive prophylactic antibiotics and antibacterials are highly recommended for patients with 22q11.2DS. So we relate to your own experience and meds used. Dyan already uses antibacterials 2/d, but they are not sufficient due to her low immunity. Trying to get Immunology Specialist to understand the clinical guidelines for 22q, let alone patient history, is very frustrating tbh.
@JustMeBeingRealКүн бұрын
@@OkAussieLife 😭😭😭🩵💖🥰🙏🏻🙏🏻🙏🏻🙏🏻
@JustMeBeingRealКүн бұрын
Yeah with all my health issues also I don't do students either I know they got to learn but you're not going to learn on me I got to have the real doctors that's been there for years I prefer them to be Foreigner doctors to be honest because they know more
@OkAussieLifeКүн бұрын
Hey Tina 👋💕 That's one of Dyan's big challenges, being Autistic, in the public health system, relying on tertiary training hospitals, putting up with the additional fuss, errors, prolonged engagement, extra talking... Rather than efficient, accurate, actions. Unfortunately, though requested to minimise, we have no control over these variables. 💖
@JustMeBeingRealКүн бұрын
@@OkAussieLife I totally understand sweethearts 😭🩵💖🥰🙏🏻
@JustMeBeingRealКүн бұрын
💖🩵💖🩵💖🩵💖🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻😭
@OkAussieLifeКүн бұрын
Thanks for the ongoing support Tina 🙏💕👋
@JustMeBeingRealКүн бұрын
@OkAussieLife always sweethearts 🥰🥰🥰🥰🙏🏻🙏🏻🙏🏻🙏🏻
@JustMeBeingRealКүн бұрын
🩵💖🩵💖🩵💖🙏🏻🙏🏻🙏🏻🙏🏻😭
@OkAussieLifeКүн бұрын
Thank you for your prayers of support and concern 🙏💕
@francinecrowe2004Күн бұрын
I'm proud how well you are doing I know your homesick hun but u need to stay I know it hards so sweet of your staff to bring you few things including photo of max Glad u are able to have some funny and fun moments It sad that sir has to sleep on such an uncomfortable chair is there any chance they could give u hosp mattress when I was in hosp caring for my mum they provided a mattress as couldn't sleep in chair ❤❤❤❤ Sending you both lots love
@OkAussieLifeКүн бұрын
Hey Francine 👋💕 Thank you, as we both really appreciate your ongoing support 🙏🤗 It's been a long stretch for Dyan, being hospitalised since Sunday ED presentation, and she has been taking it on the chin with such strength and patience, considering just how frustrating they make it. I'm trying to let her rest a little longer this morning, after the 4am OBS, and 6am med start. Her Heart Rate keeps setting the alarms off as it drops to low 30s, then more alarms as SpO2 drops to low 80s. Then there are alarms as she has seizures... All quite alarming really... No room for a mattress apparently, and not safe on the floor.
@francinecrowe2004Күн бұрын
@OkAussieLife your very welcome yea it has been very challenging time for u both but you are handling it so well 👍 it deffintly very taxing on u matt with having to do nurse job by note taking you deserve a break abd they should be caring for her that there job she deffintly is a trooper omg that is very low heart rate ❤️ and oxygen levels is she been given oxygen when they drop that low and during seizures it must be very scary seeing how truly unwell she is I mean you knew some of it with coping at home but can be distressing when you come into hosp and all the machines are showing she very unwell it break my heart how much she getting medically neglected she deserves a quality life like everyone else does I mean come on she basically confined to her bed they need a rocket shoved up there bum and need to do something before it to late :( I want to see dy beable to injoy things she love without her illness getting in the way I know that big ask but anything beter then how things are now would make such a big diffrents That shame about the mattress I didn't think about it being on floor being dangerous 😕 I really hope they will soon start dealing with why she came in once the eeg come off would she be allow of the ward to go get some fresh air and change sensory xxxxxxxx
@melaniecody768Күн бұрын
Oh no had they removed the eeg leads and why is nobody coming to help? X
@OkAussieLifeКүн бұрын
Hey Melanie 👋💕 This occurred just before Dyan was wired up for the EEG. She is still wired up day 4 now, and multiple daily seizure and Dystonia activity. Unfortunately, we haven't been able to capture a newer variant, the Atonic type, but they are infrequent. This was recorded at night, when there was a lack of staffing available unfortunately.
@melaniecody76820 сағат бұрын
@@OkAussieLife ahhh OK bless her if only they could really help, they just keep giving me more and more meds for mine..surely they should have an alternative fix I wish for us both. You two are the only people I can truly relate to, sending love xx
@OkAussieLife20 сағат бұрын
Hey Melanie, I'm sorry they aren't helping you more. Very relatable. After speaking with the neurologist I can see their limited knowledge of such a complex area, and actual ability to help, much of this is beyond them. I hope the science and research rapidly improves.
@staceyclare7393Күн бұрын
Hope you get better soon so you can get back to your animal's
@OkAussieLifeКүн бұрын
Hey Stacey 👋💕🇬🇧 Thank you for your support 🙏🩷
@Ayoub_yes_sirКүн бұрын
May god heal you
@OkAussieLifeКүн бұрын
Hey Ayoub 👋💕 Thank you for your prayers 🙏
@michelleh7405Күн бұрын
Do Ozzie hospitals offer reduced parking fees for patients & their relatives/carers after a certain number of nights as inpatient?
@OkAussieLifeКүн бұрын
Hey Michelle 👋💕 It's a little known or advertised option, to access a parking permit, and only if you qualify, based on income and pension, in some Australian hospitals. However the hoops you have to jump through to access this are excessive, and only occurs after being admitted for a few days, where you then have to see the OT -> Social Worker -> Welfare Worker -> Complete a financial needs assessment and budget review. A lot of patients would be unaware of this program, and some may cognitively not able to work through the steps.
@carolynwalker9920Күн бұрын
Don’t you get a permit for parking if you’re an in patient? Those car park fees are expensive
@OkAussieLifeКүн бұрын
Hey Carolyn 👋💕 It's a little known or advertised option, to access a parking permit, and only if you qualify, based on income and pension, in some Australian hospitals. However the hoops you have to jump through to access this here are excessive, and is only available after being admitted for a few days, where you then have to see the OT -> Social Worker -> Welfare Worker -> Complete a financial needs assessment and budget review. A lot of patients would be unaware of this program, and some may cognitively not able to work through the steps. Yes! It really is expensive and contribute to the accessibility to accessing care for those with a disability or who may be low income.💖 6-days @ $21 per day = $126 so far, just in car parking.
@tracyboswell9333Күн бұрын
I was supposed to be in that hospital for a sleep study tonight 6/2 but they cancelled due to the computers being down
@OkAussieLifeКүн бұрын
Hey Tracy 👋💕 Oh no good! Hate last minute cancellations when you've planned for the event. Luckily we haven't had any IT issues in the neurology dept with 24x7 EEG study the past few days.
@karamason7605Күн бұрын
I hope and pray things get sorted out for you Dyan and I am sending you both good vibes and prayers to get back home to babies. ❤
@OkAussieLifeКүн бұрын
Hey Kara 👋💕 Thank you so much, really appreciate the good vibes and prayers 🙏 they absolutely help 💖
@michelleh7405Күн бұрын
Keep hanging in there. Dy & Matt. Thinking of you both (& keeping everything crossed) from across the pond. Also feeling your frustration as someone who also lives with multiple chronic conditions. Just starting to get light here in the UK so I’m sending some to you🌕❤️🧡💛💚💙💜
@OkAussieLifeКүн бұрын
Hey Michelle 👋💕 Thanks for sending some light across from the UK to us in Australia 🦘 Appreciate all your support 💖🙏
@isabellaLevine-c6m2 күн бұрын
hope you get better soon darling sending you all my love and strength. Hope you get out of hospital soon.
@OkAussieLife2 күн бұрын
Hey Isabella 👋💕 Thank you for your love and support 🙏💗
@Jenniferlvn2 күн бұрын
Still thinking of you guys and hoping the best for you guys. I hope you'll be able to go home soon ❣️ sending healing love and prayers your way 💞❤️🩹🙏🏼
@OkAussieLife2 күн бұрын
Thanks Jennifer 👋💕 Really appreciate your ongoing support and prayers 🙏💕🤗
@DianeAllison-j1e2 күн бұрын
Aww sweetie, having 15 ops throughout my life I know only to well the emotional struggle of having to stay in hospital causes and it really sicks, when everyone else seems to go against you and they keep telling you that you have to stay in hospital toll your well enough is rpttwn, until you've an in patient, you'll never know what it's like. But your smashing it. You'll get there, might take a while but you'll be fine. Remember we're all with you. Stay strong lovely lady, you can do this. Much love and many hugs to you and Matt ❤❤❤❤xxxx
@OkAussieLife2 күн бұрын
Thanks Diane 👋💕 Really appreciate your support 🙏 Very relatable 💖🤗
@helengrabowska74402 күн бұрын
Awe you are missing all the fun with Max. That really sucks
@OkAussieLife2 күн бұрын
Hey Helen 👋💕 We're just so pleased that little Max, and all our menagerie of animals, are getting loads of attention and care, whilst Dyan is stuck unfortunately in hospital. There's still yet another day of EEG continuing today and tomorrow. The photo of Max is with Dyan in bed 💖🤗
@emilyblevans45452 күн бұрын
I have a twenty pound grey weighted blanket
@OkAussieLife2 күн бұрын
They work wonderfully 👋💕
@helengrabowska74402 күн бұрын
Can’t believe you actually have to pay for TV in hospital. That is so last century
@OkAussieLife2 күн бұрын
Hey Helen 👋💕 I hear you! There is probably a unit lounge somewhere with a TV somewhere in the unit... The catch is, when you are bed-bound, and particularly tethered to the EEG, that is never going to be accessed either. Between the cost of daily car-parking, food, medicines not covered, then the additional cost of a distraction from boredom such as a TV, we are going broke right now 💖
@helengrabowska74402 күн бұрын
@ I’m so sorry I know We basically used up most of our retirement savings on my husband’s cancer which left me very limited also. Never thought I would have to worry in my retirement. That of course is the other side of U.S. life. Our health care is great if you can afford it and as long as you have money you pay thru your nose and we did. We went thru two hundred thousand in a year and a half. My husband passed in 2011 and I have been living of savings to supplement social security since then. Each year things look scarier as funds dwindle
@JustMeBeingRealКүн бұрын
Y'all seriously have to pay for parking each day and you seriously have to pay for TV and the internet wow in Tennessee it's not like that and your guest even gets a Trey from the hospital and your insurance pays for it for a guest tray if they stay with you and they get to take showers and all of that I just cannot believe y'all seriously have to pay for parking and you'll have to pay for TV and the internet that's like insane and they're not feeding your husband, Dy & Matt I'm so sorry yaw having to go through all of that 😭😭😭🩵💖🙏🏻🙏🏻🙏🏻
@thesparklingunicorn85432 күн бұрын
Sending love ❤️ 😍 💖 😢 today we'll wendsday as its now almost 2am Thursday and im not asleep 😢anxious wendsday was a day that I would rather forget being hit in the head by 3 golf ball sized hail stones at work while hanging clothes they came through the light fixtures so I had to finish early and go into staff room so that is where I fell apart and the most embarrassing thing that happened was it happened when the ceco of my company was at my store 😢
@OkAussieLife2 күн бұрын
Hey Kal 👋💕 Thanks for your support. The size of that hail is crazy! Worst timing when the CEO is there.💖
@tracyprice65042 күн бұрын
Take care Matt and Dy maybe bring in a board game or something to play.
@OkAussieLife2 күн бұрын
When I finally get to pop home tomorrow that's the intention. We didn't know Dyan was being admitted, let alone for so long.
@tracyprice65042 күн бұрын
Yeah cool . Say hi to Dyan for me sending love and prayers your way.
@OkAussieLife2 күн бұрын
Thanks Tracy 👋💕 will do 🙏💖
@tracyprice65042 күн бұрын
Yep I have had that problem of not knowing who is who.
@OkAussieLife2 күн бұрын
I just had a conversation with a Dr who didn't introduce himself, wearing a plain blue scrub, no name badge, no stephascope, never met before, wasn't told he was coming, didn't ask for him... And I'm meant to know who he is? Seriously!
@ballsnbumpers2 күн бұрын
more news from me ths is actually not happy news we sadly lost one of our premiership Eagle Adam Hunter
@OkAussieLife2 күн бұрын
Oh no Cam, you are not the bearer of good news unfortunately.
@jessicamuschkat10042 күн бұрын
a camera on the Room ceiling ; so don't drill in the nose 😂😂😂
@OkAussieLife2 күн бұрын
Lol 🤣 Jessica 💕👋
@jessicamuschkat10042 күн бұрын
❤❤❤❤❤❤
@OkAussieLife2 күн бұрын
Thanks for your support Jessica 👋💕🙏
@ballsnbumpers2 күн бұрын
psa important info state election date has been set for wa state election here it is Saturday 8 March 2025
@OkAussieLife2 күн бұрын
Hey Cam in Tasmania 🤗💕 Thanks for the heads up and PSA. Now all the marketing for the polls begins!