OS ways and Poor Health

Wednesday2000

MisterPym wrote: »

Hi,

Can I ask where you get your melatonin?

thanks

Biovea UK.:)

pollyanna_26

Thank you all for your kind words . Sadly today went very badly and lasted for hours . Too tired to think but will catch up tomorrow .
Lovely picture LW cheered us both up .
Take care and stay warm everyone .

Polly x

candygirl

pollyanna_26 wrote: »

Thank you all for your kind words . Sadly today went very badly and lasted for hours . Too tired to think but will catch up tomorrow .
Lovely picture LW cheered us both up .
Take care and stay warm everyone .

Polly x

Oh no Polly.I'm so sorry to see this 😣😣

pollyanna_26

I've spent the days since DDs visit to the consultant working through my anger . I wasn't fit company for man nor beast as my mum used to say . Have finally started formulating where we go from here .
Brief events at the hospital . Nurse did usual checks . The doctor doing the genetic tracking to go to the research in Manchester asked dd if she would be willing to pop in at the end of her consultation to add to her records to be forwarded .
Called for the main reason for being there to be greeted by a young doctor we'd never met . She was lovely but could only look at brief info on diagnoses and meds on the screen and ask a few questions .
DD wanted to clarify the situation from last year which wasn't dealt with or acknowledged by the dept and ended up with two lots of Barbotage after oral and injected steroids couldn't help all sorted by our GP .
She also wanted to discuss the pain relieving meds mentioned about 4 years ago by the Consultant which can be prescribed alongside the MTX . DD has never been happy with the long term morphine and there are other drugs to control the pain our dr can't prescribe .
None of that was within the young Drs remit .
It just went on and on . DD was stressed , in pain and exhausted and burst into tears . Lo and behold the Dr went to fetch the Consultant who should have been present .
Downhill from there . No she can't prescribe for pain because dd shouldn't have pain with PsA ( contrary to all symptoms of the disease ) Long lecture on Calcification for Dummies . We found all that information over a year ago when Rheumo weren't responding .
The whole tone was try harder , exercise hard and push yourself on . Throw in lecture designed for drug addicts and dd left the room in tears . I'd followed the whole thing all the way through and it was nasty , judgemental and damaging for someone trying to cling to a few shreds of self belief or validation ,
I was held back by a barrage of questions after dd staggered out . Her walking stick and warm coat were still with me . We were many miles from home and our friend was nearby but needed a call to pick us up .
I wanted to reach her . Consultant said " she'll just be sitting in the coffee shop waiting for you " Not in your widest dreams ! She'll be heading for the way out . Oh do fetch her back to talk to me .
Young Dr and a nurse ran through the hospital with me . I told them to go back when we got to the exit .
Tried her mobile with no reply and after a search found her tucked away near the main gates and friend turned up quickly to take us home
A new appt sent today for next June and a seperate envelope from the research team for bloods with a nice handwritten post it note .
6 months to sort this and undo the damage .
The clinical lead at the pain clinic and our doctor are first part of the plan .
Rebuilding dd will be the main focus .

I'll have you both in my thoughts tomorrow LW , positive thoughts for both the scan and journey .

polly xx

Prinzessilein

Polly - gentle, supportive hugs for you and your dd.

Continuity of Care is something that really irks me!....I have regular appointments at the skin department...and rarely if ever have I seen the same doctor twice....they often rely on me to remember what happened at the last meeting...half of the appointment is usually them reading through my notes.

If your dd could see the same doctor each time it would be less stressful for her, and she would be with someone who is able to prescribe whatever she needs.

It was so good that you were with her, and able to retrieve her after she ran off in a panic.

Perhaps - after you have calmed down! - a strongly worded letter to the hospital would be an idea?...Just to let them know where they have failed in their duty of care, so they can improve.

I have been AWOL for a while...it has been a raft of appointments for mum and myself...a family visit which lasted about three hours and left me hors-de-combat for about three days. (And certain family members smiled and told me how wonderful it is that I am looking so good and fit...and they just don't want to listen to any talk about how it affected me the next day)

Still - I managed to get to the posh afternoon tea last week...and this was with a couple of lovely supportive people (one in particular is just so understanding!)...it was a really nice afternoon....I brought a plastic box with me, I KNEW I wouldn't manage to eat everything - so I had leftovers for lunch the next day!

pollyanna_26

Hi Prinzess . Thank you for your kind words . DD is supposed to see her consultant once a year and her Rheumo nurse in the other six months , last nurse appt was early summer last year just weeks before the calcification began . No advice when I phoned her nurse for advice .
An appt was made for early this year with the consultant and the hospital pushed it months into the future three times so it ended up in October , dd had Norovirus so it had to be arranged for last week .

I have considered contacting PALS at the hospital to register a complaint but looking at the reviews and feedback from other patients it doesn't seem to make a difference .
I want to save my energy for positive action . We're both in fibro flares which is to be expected .
Our Dr is very proactive and will be very supportive . If I'd phoned he'd have seen her but she's already booked in this coming Friday for her 2 weekly face to face with him .

Those family visits do take a toll . Totally understand the oh you do look well comments . I think that goes with the territory .

Was that the afternoon tea you booked a while ago ? It sounds really lovely and in good company too . I believe if we're going to do something challenging best make it appropriate and personally enjoyable .

I hope the appointments for you both went well . Gentle hugs to you both . Stay warm and make the most of warm blankets and the joy of crafting or a good book . I should have knitted a few Stormy Weather shawls by now but haven't . I'll direct my energy into picking up the needles as they look and sound lovely, warm but not heavy .

polly xx

LameWolf

Oh Polly I could cry for you and your poor DD, I really could.
I really do wish these health-care bods could have to experience the suffering that we, their patients and, let's face it, their means of making a living, have to go through just for one week of their lives. They wouldn't be quite so quick to say "push yourself harder" etc, etc then, I'll bet.

Gods, it took me over 10 mins to type that paragraph - brainfog; I couldn't get the word "experience" to surface in my addled brain. Ever get that, folks? You know what you mean; you know that the word you want is within your vocabulary, but what the heck is the blighted word itself??

I am trying (and failing) to not think about tomorrow; I am beyond scared; specially as you can bet your boots they won't tell him anything; they'll just do the CT scan and sent it along to the consultant. Not looking forward to driving again, either; but we did a recce yesterday and know where we need to go, and I have taken detailed notes of where to turn, which way, and also the names of the roundabouts so hopefully I shan't get lost.

pollyanna_26

Very familiar with brain fog spelling and words . Can see the word in my head but can't carry it to the keyboard .

I knew you'd be stressing about tomorrow so remember we and others will be beside you all the way in spirit and support .

We've found it depends on who does the scans . The ones for barbotage were done by the specialist who did the procedures at two later dates so he could give an instant diagnosis and view of the screen to confirm . Some staff don't have the qualifications to discuss results .

The whole awful scenario on Wednesday was like a very bad farce .
Doesn't inspire any confidence when you are better informed than a Consultant . We'll start with our Dr on Friday . I've suggested we bullet point this and dd hands it to the Dr to save his ears and any confusion . He already had set a plan in motion for some talking therapy in the surgery as dd was starting to struggle and the old agrophobia was creeping back .
I hate feeling angry so we're trying to look for solutions . We can't change what happened but we'll make sure it wont happen again .
I can still see dds arm being bent and forced up her back and that is unacceptable .

And breathe . Good luck and decent weather tomorrow . Try to get some sleep if you can .

polly xx

Wednesday2000

pollyanna_26 wrote: »

.
It just went on and on . DD was stressed , in pain and exhausted and burst into tears . Lo and behold the Dr went to fetch the Consultant who should have been present .
Downhill from there . No she can't prescribe for pain because dd shouldn't have pain with PsA ( contrary to all symptoms of the disease ) Long lecture on Calcification for Dummies . We found all that information over a year ago when Rheumo weren't responding .
The whole tone was try harder , exercise hard and push yourself on . Throw in lecture designed for drug addicts and dd left the room in tears . I'd followed the whole thing all the way through and it was nasty , judgemental and damaging for someone trying to cling to a few shreds of self belief or validation ,

God, that sounded bluddy awful!:mad: I'm sorry you both had to go through that.xxx:(

Prinzessilein wrote: »

Still - I managed to get to the posh afternoon tea last week...and this was with a couple of lovely supportive people (one in particular is just so understanding!)...it was a really nice afternoon....

That sounds lovely.:)

LameWolf wrote: »

I am trying (and failing) to not think about tomorrow; I am beyond scared; specially as you can bet your boots they won't tell him anything; they'll just do the CT scan and sent it along to the consultant. Not looking forward to driving again, either; but we did a recce yesterday and know where we need to go, and I have taken detailed notes of where to turn, which way, and also the names of the roundabouts so hopefully I shan't get lost.

I hope it goes okay.xxx

LameWolf

CT scan all done; as we suspected, there's no information for Mr LW, it will all go to the consultant for him to look at. We just have to wait for appointments for the other two tests now.

I managed the drive reasonably well; I didn't park back in our driveway when I got home, I parked by the hedge at the bottom of the close, because next door have relatives over most weekends, as well as two large cars themselves, neither of which has ever seen the inside of their garage, and they park so selfishly that I can't reverse out of our driveway without help. I suspect their son was somewhat put out, but tough - if he parked prettily to start with, there wouldn't be a problem.
I was shaking like a leaf by the time I got back to the horse-piddle to collect Mr LW, though.