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Am in rehab

Melissa in Australia

By Melissa in Australia,
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Melissa in Australia

Melissa in Australia

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I don't know yet. I was aiming to be able to walk 40 metres.. That is the distance from my bed to the bathroom and back. With a walker. The OT yesterday told me that would be a bit of a challanging goal and I might need to think of using a wheelchair for part of the distance. 

The physio took me to the rehab gym yesterday.. I lasted less than 5 minutes only doing arm exercises while seated before I had to lie down in the gym to rest enough so I could  be wheeled back to bed.  I am so utterly disappointed in my very slow practically nonexistant improvement. 

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Innisfree

Innisfree

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23 minutes ago, Melissa in Australia said:

I am so utterly disappointed in my very slow practically nonexistant improvement. 

Sending lots of hugs.

You’ve been hospitalized and very sick for a long time. Your disappointment is completely understandable, but recovery is likely to be a slow process, measured in baby steps. I’m glad you’re at a point where the problem is identified, you have a treatment plan, and you’re starting rehabilitation. You’ve come a long way already… easy for me to say, I know. Just don’t be hard on yourself if things are slower than you hoped.

Now that you’re in rehab, are you still in contact with your doctors? Have they given you any sense of their expectations for your recovery?

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prairiewindmomma

prairiewindmomma

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Melissa, if it’s of any encouragement, my journeys back from full bedrests have been similar. I know a pp mentioned it taking a couple of years to be back at full strength and she was not wrong. Walking, showering, preparing a meal are all huge milestones you will have to work hard to achieve…but progress, while incremental, is completely achievable.

Do they have you on a pulse ox and heart rate monitor to measure how your body is reacting to movement? Are you staying sufficiently oxygenated? Really, when I am below 92 I find it so much harder to do anything.

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YaelAldrich

YaelAldrich

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I know you feel like you need to get back as soon as you can but you also need to get better and the place to do that is at a rehab.

Rehab and PT is so so hard (from experience having a very bad leg/ankle break. But do everything the physiotherapists request of you. Including resting as that is an actual part of recovery. 

I know you don't feel like you are getting anywhere but you need to look backwards to see that you actually have accomplished so much already!

I'll continue to pray for you and your family.

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ktgrok

ktgrok

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2 hours ago, Melissa in Australia said:

I don't know yet. I was aiming to be able to walk 40 metres.. That is the distance from my bed to the bathroom and back. With a walker. The OT yesterday told me that would be a bit of a challanging goal and I might need to think of using a wheelchair for part of the distance. 

The physio took me to the rehab gym yesterday.. I lasted less than 5 minutes only doing arm exercises while seated before I had to lie down in the gym to rest enough so I could  be wheeled back to bed.  I am so utterly disappointed in my very slow practically nonexistant improvement. 

Is your heart rate still being super wonky? Do they know why yet, or do they think it is basically POTS or? Is the prednisone expected to shrink the lesions in your lungs?

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Melissa in Australia

Melissa in Australia

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My heart rate is mostly limited now by the medication, but I am getting getting  heart pain  multiple times an hour though. When the medication is just about due I have very elevated pulse episodes (possably ventricle tachicardia happening then?? ) . I don't have POTS, Blood pressure doesn't drop . I have tachicardia most probably because I might have sarcoid in my heart. the heart medication is absolutely magic at keeping my pulse down. The steroids are specifically to reduce the sarcoid in my heart. They wouldn't have prescribed it for me if it was just in my lungs because of how nasty all the side effects of steroids are. The sarcoid damage in my lungs is non functional damage.  Might also have sarcoid in my nervous system as I have a tremor in right hand. 

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Drama Llama

Drama Llama

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1 hour ago, Melissa in Australia said:

I have to go home as soon as I am able.. Things are unravelling at home. Even if I am just lying on the couch all day I will be another pair of eyes. 

I'm sure it's hard at home, but they need you to get better.  Skipping needed recuperation time and therapy isn't the solution. 

Can the twins go to school 5 days a week while you're away?  

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Terabith

Terabith

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9 minutes ago, Rosie_0801 said:

You shouldn't be going home while you can't defend yourself.

Once again, Rosie is wise.  I would think walking to the bathroom and back and ideally taking a shower yourself should be the minimum of what you need to be able to do before you go home.  

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Melissa in Australia

Melissa in Australia

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One of the twins (the magpie) found and picked up  and brought home and dropped on his bedroom floor a sealed baggie of illigal drugs pills. Enough to kill him.  So luckily he didn't know what they were or think they were lollies and eat them.. 

As he doesn't go anywhere apart from school and home we can only surmise he found them at school. Maybe there are other magpie kids at school who find things pick them up and drop them at random places 

 When DH told me. I was so violently ill, vomiting the whole day at just the thought of what could have happened. 

 

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Drama Llama

Drama Llama

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2 minutes ago, Melissa in Australia said:

One of the twins (the magpie) found and picked up  and brought home and dropped on his bedroom floor a sealed baggie of illigal drugs pills. Enough to kill him.  So luckily he didn't know what they were or think they were lollies and eat them.. 

As he doesn't go anywhere apart from school and home we can only surmise he found them at school. Maybe there are other magpie kids at school who find things pick them up and drop them at random places 

 When DH told me. I was so violently ill, vomiting the whole day at just the thought of what could have happened. 

 

I'm sorry that must have been so terrifying. 

How did school react when you talked to them?  I would probably involve the police if that happened to me. 

Edited by Drama Llama
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prairiewindmomma

prairiewindmomma

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Melissa, no need to answer, but did they ever mention doing methotrexate or biologics for your sarcoidosis once the prednisone knocks it back a bit? It’s fairly common here to prescribe either infliximab (Remicade in the US) or adalimab (Humira in the US) for sarcoidosis because high doses of prednisone long term isn’t lovely. Methotrexate is usually used before biologics just because the pills are dirt cheap. Even the injectable version is relatively cheap; I think I pay about $6/vial cash price.
 

https://link.springer.com/article/10.1007/s41030-021-00160-x

I’m glad they’ve found something to manage the tachycardia, hopefully they can get the angina under control.

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Resilient

Resilient

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5 hours ago, Melissa in Australia said:

Dh did the contacting of school and police 

The school reaction. All Medication is stored in locked safes. We don't have other drugs here 

Police response. Chuck it in the bin. What do you expect us to do about it. 

This is where we need an ANGRY emoji.   

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bolt.

bolt.

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20 hours ago, Melissa in Australia said:

One of the twins (the magpie) found and picked up  and brought home and dropped on his bedroom floor a sealed baggie of illigal drugs pills. Enough to kill him.  So luckily he didn't know what they were or think they were lollies and eat them.. 

As he doesn't go anywhere apart from school and home we can only surmise he found them at school. Maybe there are other magpie kids at school who find things pick them up and drop them at random places 

 When DH told me. I was so violently ill, vomiting the whole day at just the thought of what could have happened. 

 

That sounds deeply, existentially, terrifying. I'm shocked and appalled that that happened, and that you are getting no appropriate response from the school or the police.

I don't want to minimize it.

But I also want to remind you, from a place of cold logic, that the exact same events would have transpired if you had been in the house at the time. Nothing your presence would have done or could have done would have mitigated that risk -- not even slightly. An extra set of 'eyes on' might have seen the baggie... but the baggie *was* seen... so that's exactly the same.

Please don't let your sense of things unraveling at home short-circuit you getting good treatment and reasonable recovery. I'm all for 'laying down our lives' for the wellbeing of one's family. But in this case, consider the reality of risking your life and/or your long-term capacity to live life normally to try to rush home. Coming home unwell, and becoming more unwell, or just never getting any better after they day you get home... that kind of speed with that kind of result 'as soon as possible' is empirically and measurably inferior to taking the time to be better, and be getting better, and being your capable-and-improving self that would happen on a reasonable heading-home timeline.

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Melissa in Australia

Melissa in Australia

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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. 

 

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