Kassia Posted September 19, 2023 Share Posted September 19, 2023 I'm sorry, @Melissa in Australia That must be so hard being stuck there and not being able to help plus the stress of knowing all of that is going on while you're struggling so much with your recovery. 4 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 19, 2023 Author Share Posted September 19, 2023 (edited) They have always been very lightfingered. That is why we can never take them To another persons house ever. They can behave but only when they know that they are under constant supervision. Dh can't do it alone 24/7 Edited September 19, 2023 by Melissa in Australia 14 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted September 19, 2023 Share Posted September 19, 2023 26 minutes ago, Melissa in Australia said: They have always been very lightfingered. That is why we can never take them To another persons house ever. They can behave but only when they know that they are under constant supervision. Dh can't do it alone 24/7 Does mental health services offer any respite for them? Or in home help? Here in the US they would qualify for that. I am sure behaviors are even worse with you gone as they are worried about mom but can’t express it. 6 3 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 19, 2023 Author Share Posted September 19, 2023 2 hours respite a week each 10 Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 19, 2023 Share Posted September 19, 2023 11 minutes ago, Melissa in Australia said: 2 hours respite a week each Any chance that using respite would make the problems more obvious so that they could qualify for more hours? 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 19, 2023 Author Share Posted September 19, 2023 We are going to fire the respite worker today. I won't be able to organise a new one until I can get home. 11 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted September 19, 2023 Share Posted September 19, 2023 1 hour ago, Melissa in Australia said: Dh rang me extremely distressed last night The boys, as soon as dh leaves the house to do something like feed the chooks, or if they all go outside and the boys are riding their bikes around so dh thinks he will quickly start the pump and water the veggie garden. Those boys gave been sneeking back into the house and ransacking the place. Stealing whatever breaking whatever. Going into the outside room that they have never been allowed into that has stored in it large model aeroplanes that our 2 oldest sons made and taking them and damaging them. Rifling through everything everywhere in every single room and cupboard in the house. And then telling the most outrageous lies. It is school holidays this week and next.. So no break for him at all, not for a minute. He is at his complete wits end. 1 hour ago, Melissa in Australia said: They have always been very lightfingered. That is why we can never take them To another persons house ever. They can behave but only when they know that they are under constant supervision. Dh can't do it alone 24/7 Do they qualify for any sort of inpatient care facility? I don’t know how to phrase this gently, but it sounds like they are reaching a point where you and your dh may not be able to care for them at home without serious risks to your own personal safety. 7 Quote Link to comment Share on other sites More sharing options...
cintinative Posted September 19, 2023 Share Posted September 19, 2023 (edited) Is there such a thing as a day camp for special needs during the holidays that they would qualify for? I know these things cost money and that is really, really hard. I know you so want to be there to help. Edited September 19, 2023 by cintinative 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 19, 2023 Author Share Posted September 19, 2023 (edited) Day camp isn't really a thing in Australia Plus we live remote. So activities available in cities aren't available locally Edited September 19, 2023 by Melissa in Australia 2 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted September 19, 2023 Share Posted September 19, 2023 17 minutes ago, Melissa in Australia said: Day camp isn't really a thing in Australia Plus we live remote. So activities available in cities aren't available locally What do working Australian parents do with their kids when school is out? I realize that the remote thing changes that, but in cities, what do parents do for childcare/ Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted September 19, 2023 Share Posted September 19, 2023 5 minutes ago, Drama Llama said: What do working Australian parents do with their kids when school is out? I realize that the remote thing changes that, but in cities, what do parents do for childcare/ Most schools that run before and after school care will run school holiday programs during the same hours, or the local council will. Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 19, 2023 Author Share Posted September 19, 2023 Couples alternate holidays to look after their kids.. Or use relitives extensively. Or they organise with friends to take alternate days off 1 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted September 19, 2023 Share Posted September 19, 2023 1 minute ago, Rosie_0801 said: Most schools that run before and after school care will run school holiday programs during the same hours, or the local council will. In the US, that's what we call a day camp. 1 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted September 19, 2023 Share Posted September 19, 2023 43 minutes ago, Catwoman said: Do they qualify for any sort of inpatient care facility? I don’t know how to phrase this gently, but it sounds like they are reaching a point where you and your dh may not be able to care for them at home without serious risks to your own personal safety. This has been on my mind as well. With consideration for how difficult it would be emotionally, I am concerned about your going home while still sick, and them realizing that you cannot enforce the rules like you could previously. 6 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted September 19, 2023 Share Posted September 19, 2023 1 hour ago, Drama Llama said: In the US, that's what we call a day camp. Well not that just. Lots of special organizations have day camps. Like museums, nature areas, boys and girls organizations, sports, churches, etc, etc, etc 2 Quote Link to comment Share on other sites More sharing options...
Popular Post Melissa in Australia Posted September 19, 2023 Author Popular Post Share Posted September 19, 2023 Walked 15 metres today, with walker before having to rest. Yay 52 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted September 19, 2023 Share Posted September 19, 2023 5 minutes ago, Melissa in Australia said: Walked 15 metres today, with walker before having to rest. Yay That is great 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted September 19, 2023 Share Posted September 19, 2023 6 minutes ago, Melissa in Australia said: Walked 15 metres today, with walker before having to rest. Yay Yay! That’s great news!!! 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted September 19, 2023 Share Posted September 19, 2023 15 meters is fantastic. That’s such good news. 1 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted September 20, 2023 Share Posted September 20, 2023 15 minutes ago, Melissa in Australia said: Walked 15 metres today, with walker before having to rest. Yay Wonderful! 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted September 20, 2023 Share Posted September 20, 2023 25 minutes ago, Melissa in Australia said: Walked 15 metres today, with walker before having to rest. Yay That is huge improvement. Congrats 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted September 20, 2023 Share Posted September 20, 2023 Wow, that is fantastic! So happy for you! 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted September 20, 2023 Share Posted September 20, 2023 Bravo. I’m so happy for you! 1 Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted September 20, 2023 Share Posted September 20, 2023 That is fantastic!! Take your well-deserved rest! 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 21, 2023 Author Share Posted September 21, 2023 Just to make sure things don't get too boring.. My heart today was beating too slow. Pulse was 42. Boy did I feel awful and so so cold. Glad it is back to normal again. It was only for a short while.. I think I prefer too fast. 26 Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted September 21, 2023 Share Posted September 21, 2023 ((hugs)) That sounds horrid! Quote Link to comment Share on other sites More sharing options...
ktgrok Posted September 21, 2023 Share Posted September 21, 2023 8 hours ago, Melissa in Australia said: Just to make sure things don't get too boring.. My heart today was beating too slow. Pulse was 42. Boy did I feel awful and so so cold. Glad it is back to normal again. It was only for a short while.. I think I prefer too fast. Hugs. I was reading that some patients with cardiac sarcoid end up with a pacemaker to fix the heart rate issue. Not sure if that was mentioned to you, but something to keep in mind. Especially given how far away your house is from. medical care if you have an issue. Hugs. 4 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted September 21, 2023 Share Posted September 21, 2023 1 minute ago, ktgrok said: Hugs. I was reading that some patients with cardiac sarcoid end up with a pacemaker to fix the heart rate issue. Not sure if that was mentioned to you, but something to keep in mind. Especially given how far away your house is from. medical care if you have an issue. Hugs. Yes. I worry due to your rural location and distance to medical care. 4 Quote Link to comment Share on other sites More sharing options...
KSera Posted September 21, 2023 Share Posted September 21, 2023 On 9/18/2023 at 2:08 PM, Melissa in Australia said: the heart medication is absolutely magic at keeping my pulse down. You probably know this, but in case no one has thought to mention or explain, a side effect of the beta blockers keeping your heart rate down is decreased exercise tolerance. Since your heart rate isn’t able to elevate in response to exercise the way it usually would, that’s likely further contributing to feeling winded more quickly. Obviously you need the medication right now, so that’s just how it is, but it can be helpful to know part of getting short of breath quickly can be the beta blocker. And of course the sarcoid is having its own contribution at the same time. 13 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 21, 2023 Author Share Posted September 21, 2023 My heart can elevate and still does. The iverbradine has just lowered the range of pulse to a more normal one. I can't even walk without the iverbradine. I have read also about some people needing a pacemaker.. I have also read about the abrupt heartfailure. Sometimes it is best not to read too much as it just increases anxiety 21 Quote Link to comment Share on other sites More sharing options...
Popular Post Melissa in Australia Posted September 22, 2023 Author Popular Post Share Posted September 22, 2023 Walked 22 metres in rehab. And I had rehab 3 times today.. Walked that distance with walker each time. 56 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted September 22, 2023 Share Posted September 22, 2023 53 minutes ago, Melissa in Australia said: Walked 22 metres in rehab. And I had rehab 3 times today.. Walked that distance with walker each time. WOW! 3 Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted September 22, 2023 Share Posted September 22, 2023 55 minutes ago, Melissa in Australia said: Walked 22 metres in rehab. And I had rehab 3 times today.. Walked that distance with walker each time. Amazing! 2 Quote Link to comment Share on other sites More sharing options...
Kassia Posted September 22, 2023 Share Posted September 22, 2023 1 hour ago, Melissa in Australia said: Walked 22 metres in rehab. And I had rehab 3 times today.. Walked that distance with walker each time. Wow, that is amazing! I hope you feel us all cheering you on! ❤️ 2 1 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted September 22, 2023 Share Posted September 22, 2023 @Melissa in Australia, I'm sorry to hear about the issues at home and how hard it is being on your family. I was encouraged to read about the walking improvement! I continue to pray and hold you in my thoughts during this trying time. 3 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted September 22, 2023 Share Posted September 22, 2023 14 hours ago, Melissa in Australia said: Walked 22 metres in rehab. And I had rehab 3 times today.. Walked that distance with walker each time. Wow! That is a BIG jump from a few days ago!!! 7 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 25, 2023 Author Share Posted September 25, 2023 Just to throw a spanner in the works The last 2 mornings I have had a tachycardia episode of extremely high pulse for an extended period of time accompanied by seizures. MET teams have had to be called both times. It leaves me so washed out and drained that I sleep pretty much for the rest of the day and can't do rehab. 45 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted September 25, 2023 Share Posted September 25, 2023 Oh no! I'm so sorry to hear that! I hope your doctors can figure out what's going on, so they can fix the problem for you. It sounds scary! 😞 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted September 25, 2023 Author Share Posted September 25, 2023 It is pretty scary. I have never had seizures before. Today the whole episode went for at least 30 minutes. Pulse 176, crushing heart pain and seizures. 1 40 Quote Link to comment Share on other sites More sharing options...
Starr Posted September 25, 2023 Share Posted September 25, 2023 I’m so sorry. How discouraging! Praying that resolves quickly. 1 Quote Link to comment Share on other sites More sharing options...
Mom_to3 Posted September 25, 2023 Share Posted September 25, 2023 Oh, how scary!! I hope they figure out a way to prevent this soon...though I suppose it's good this is happening while you are still under medical supervision rather than at home. 5 Quote Link to comment Share on other sites More sharing options...
Kassia Posted September 25, 2023 Share Posted September 25, 2023 @Melissa in Australia I'm so sorry. That must have been so scary and uncomfortable. 😞 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted September 25, 2023 Share Posted September 25, 2023 That sounds awful. Praying for you. 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted September 25, 2023 Share Posted September 25, 2023 On 9/20/2023 at 7:02 AM, Melissa in Australia said: Day camp isn't really a thing in Australia Plus we live remote. So activities available in cities aren't available locally Crazy thought but with school holidays coming up is there any chance of getting them into OSHC? Just for a bit of a breather 1 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted September 25, 2023 Share Posted September 25, 2023 @Melissa in Australia, oh that is scary! Praying for relief and peace and calm for you! Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted September 25, 2023 Share Posted September 25, 2023 Praying for you!! 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted September 25, 2023 Share Posted September 25, 2023 (((Melissa))) 1 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted September 25, 2023 Share Posted September 25, 2023 7 hours ago, Mom_to3 said: Oh, how scary!! I hope they figure out a way to prevent this soon...though I suppose it's good this is happening while you are still under medical supervision rather than at home. This was my thought too! I'm so glad you are still in a medical facility that could treat this. And I'm sorry. I know this is scary and discouraging. 2 Quote Link to comment Share on other sites More sharing options...
Faith-manor Posted September 25, 2023 Share Posted September 25, 2023 Melissa, I am so sorry! I hope they get to the bottom of this quickly. Hugs 1 Quote Link to comment Share on other sites More sharing options...
klmama Posted September 25, 2023 Share Posted September 25, 2023 (((Melissa))) Praying for you. 1 Quote Link to comment Share on other sites More sharing options...
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