“Rock bottom became the solid foundation on which I rebuilt my life.”

HairyHandofDartmoor

I'm sorry Wannabe . I hope things get better soon.

teafor2

I'm really sorry to hear that Wannabe. x

WannabeFree

I don't think so Beanie Thank you though.

She's already been at the maximum doses of the options we have to use. I knew the recent need for more steroids for acute illness related to it would mean we didn't have control of the situation when they assessed it today. We are trying an unlicensed drug for 6 weeks to see where we stand then. Hopefully it will work, I'm willing to try anything they offer licensed or not. The benefits definitely outweigh the risks of doing nothing. Should this not work they don't know what to do next there's no where more we can go really. It will be more investigations, more tests etc to check they aren't missing something else (which then makes me think why not just do them anyway? if that's a possibility) Every time she gets knocked down with these periods of being unwell there is more damage being added that can't be repaired.

The steroids have left more changes in her bones and we know it's likely its the shorter high dose ones than the daily maintenance ones. Although of course neither are doing her good longer term.

It probably really doesn't make much sense sorry

x

teafor2

It sounds a really stressful situation I know family support is limited but do you have support from anywhere else - a friend, the medical profession? Just to ease the load a bit, even if it's just talking things through. x

beanielou

WannabeFree wrote: »

I don't think so Beanie Thank you though.

She's already been at the maximum doses of the options we have to use. I knew the recent need for more steroids for acute illness related to it would mean we didn't have control of the situation when they assessed it today. We are trying an unlicensed drug for 6 weeks to see where we stand then. Hopefully it will work, I'm willing to try anything they offer licensed or not. The benefits definitely outweigh the risks of doing nothing. Should this not work they don't know what to do next there's no where more we can go really. It will be more investigations, more tests etc to check they aren't missing something else (which then makes me think why not just do them anyway? if that's a possibility) Every time she gets knocked down with these periods of being unwell there is more damage being added that can't be repaired.

The steroids have left more changes in her bones and we know it's likely its the shorter high dose ones than the daily maintenance ones. Although of course neither are doing her good longer term.

It probably really doesn't make much sense sorry

x

Yes no bleeping DLA.
Did you manage to mention it today at all?

WannabeFree

Not really Teafor2, I don't really have friends Not anyone I could talk to/rely on for anything. Some in her team are lovely though and she spent quite a while today talking things through even when she should have finished her shift before our appointment even started.

Yeah Beanie they are providing as much evidence as they can and said it should be more than enough for it to be sorted at an appeal should we reach that point. I think when I rang today though they don't accept new evidence for the MR and only once it reaches appeal? I will call again Monday to clarify I was too upset to fully listen and take in what they said today

beanielou

This should just never need to go to appeal.:mad::mad::mad:

WannabeFree

In MSE news I cashed out £11 from PA yesterday. Knowing it hits Circle on Friday. Nope not today :cool: I needed it for electric too It won't go off through the night so I will sort that battle tomorrow.

Youngest still isn't in bed Well she is but isn't sleeping she hasn't shut up talking. Nothing wrong with her mouth :rotfl: I really need to do the decorations tomorrow with her. Times like now I feel really tempted to use the last bit available on the credit card to get some food and things to just make everything feel 'better' < not so MSE

teafor2

It's a shame there's no-one you can physically talk to/rely on, but we're all rooting for you on here Do you have to make the DLA phone calls personally or could somebody at the hospital/surgery do it on your behalf. I hate the thought of you dealing with the practicalities of everyday life with 3 little ones and on top of that having to deal with people on the phone as well. Just ignore me if that's a really stupid thing to say, I've absolutely no idea about DLA. It just sounds like you could do with some help x

Cherryfudge

Hi Wannabe, I've been away for a couple of days so have just caught up and wanted to say I think you are coping amazingly day to day although it's such a tough time. Just keeping things going for the little ones is the best thing anyone can do for them, especially when you are carrying so much yourself.
You may not have people close by to talk to but there's always this forum, and some lovely caring people are on these boards.
Tomorrow is another day and maybe something good will happen in it x