The (not so old) Crocks Cafe

LameWolf

Hey there, Paw lovely to see you. A lot of the old regulars seem to be MIA. I'm never sure whether to PM them, or if it'd be seen as being intrusive/nosy; but I'm glad to see you back online.:T

SingleSue

Well now coming to terms with eldest sons diagnosis although ex mother in law came round in a mad panic on Wednesday...we had tried to prepare her for what they were investigating but she had taken the route of listening to someone else over us which didn't prepare her at all...result was panic stricken granny.

We have been investigating the local anesthetic link since Trialia mentioned it, eldest only has partial success with it, middle one it fails on completely and yesterday my father says it fails on him too, it never works that well on me anyway but just assumed you would still feel some pain even with the injection...and the pain of the injection is always over countering any pain killing effect anyway!

My mum is really starting to struggle looking after my dad and having to do all the driving, yesterday I got a phone call to take them shopping as her knees and ankles are just too painful to drive with....bit of a funny moment when dad got out the car though, he got his foot stuck between the car and the kerb and because he is not that steady/coordinated, he couldn't get it out, so there was him going "I'm stuck" and mum saying "What do you mean you are stuck" until we eventually got out of the car and moved his foot for him.

His after care has been hopeless, no physio, no OT, no GP, nothing.....they even had to make an appointment to see the GP to talk things through with him as he had not made any contact at all..the GP did then refer to a local physio who when they contacted my parents, said "I heard you have had a minor stroke"...err no he hasn't, he had a major stroke and then a minor stroke which has damaged an entire section of brain and a third of another part and so bad that an op to sort out the carotid artery is far too dangerous to attempt right now.

Dad has been told not to use the stairs by the GP and to only have showers instead of a bath (due to the problem of getting him out of a bath if he has a problem and the getting into and out of a bath) but their toilet (and bathroom) is upstairs and the shower is an over the bath one! At the moment, dad goes up the stairs on hands and feet for stability and has a bucket downstairs to go for a wee.

The other complication is that he was already disabled before the stroke, not enough to really adapt their home as he still had his good leg to use (his left one), now his good leg is his bad leg and it is creating problems on what was formerly his bad leg which is now having to take the place of the good leg!

Careful_with_that_Axe

Hi all. lw I would never see a PM as intrusive or nosey at all. I am reading along from time to time, just not posting much. Have had another bout of ill health that has knocked me on my arris for the last 3 weeks or so. No matter, onwards and upwards.

'ugs to all.

LameWolf

CwtA Big (((HUG))) for you; you sure are getting more than your fair share of naff health.:( I just hope it starts to get a bit better for you soon. Any further news re your poor face?

SingleSue What can I say - AAAARRRRGGGGHHHHH bloomin' health "services" can drive you mental! As if your Dad doesn't have enough to contend with!

Well, I can only hope it starts to get better for all my friends here.:o Surely we all deserve a break?:o

bigzippy

LameWolf wrote: »

Hey there, Paw lovely to see you. A lot of the old regulars seem to be MIA. I'm never sure whether to PM them, or if it'd be seen as being intrusive/nosy; but I'm glad to see you back online.:T

Careful_with_that_Axe wrote: »

Hi all. lw I would never see a PM as intrusive or nosey at all. I am reading along from time to time, just not posting much.

What she said lw. i've been popping by too but not really had anything to add or been fit to post much. Hubby's been off a fair bit lately, most was a long weekend coinciding nicely with my birthday we've had a couple of viewings on the house now. And i'm in a flare that never ends, and it's now thought that i've had a 'paradoxical reaction' to the second anti-epilepsy treatment i was on to try and !!!! with the breakthrough pains. *rolleyes*

Sorry for dodgy grammar and whatnot-i'm in bed on my phone pretending my body's not nocturnal!

Oscar_The_Grouch

Debbiedeboo, We all understand you have to make a living, so don't apologise!! Hope the business is going well. I believe THIS is the link you wanted to post (if I do it, it's not advertising because I don't have any connection to your business).

I've not been in here for a while - lots of things happening with hospitals, doctors and the like, so I've been busy. I think we may be getting closer to a diagnosis for the problems with my legs so that's good. Just waiting for appointments to go in for some more tests locally and then up to London for them to have a good look at my brain. Exciting stuff!!!

debbiedeboo

Oscar_The_Grouch wrote: »

Debbiedeboo, We all understand you have to make a living, so don't apologise!! Hope the business is going well. I believe is the link you wanted to post (if I do it, it's not advertising because I don't have any connection to your business).

I've not in here for a while - lots of things happening with hospitals, doctors and the like, so I've been busy. I think we may be getting closer to a diagnosis for the problems with my legs so that's good. Just waiting for appointments to go in for some more tests locally and then up to London for them to have a good look at my brain. Exciting stuff!!!

Thanks Oscar, I thought everyone was going to shout at me and I was dreading it! I need someone else to be the business face of GlamSticks so I don't have to do this kind of thing, I hate it!! Unfortunately GlamSticks is just me, promoter, designer, craftsperson, email replyer, counsellor (I guess the nature of GS means I get emails from people who just want to talk about their illnesses) and now nasty person!
Thanks again and thanks for the link xx
By the way, I should clarify I don't actually make a living out of GlamSticks at the moment. I'm running it on a non profit basis. I just charge cost price or sometimes less for the sticks. It's therapy for me and I'm hopefully helping others. At the same time, I may want to turn it into something profit making in the future but that time isn't yet. I'm not well enough to have a proper business.

SingleSue

Well I bowed down to pressure and took myself off to the doctors today.....wish I hadn't now as I felt a complete time waster (or was made to feel like it anyway).

Upshot, I am being sent for physio on the shoulder I damaged falling down the stairs in January, they might take a look at my back while there and absolutely begger all for my knees, the tiredness, the walking through sludge feeling, my wrist and my toes!

Doc didn't even examine my back or go through the range of movements in it (or even asked what type of pain, what movements caused it etc), she did the range of movement in my knees - good (no poo Sherlock, I AM hypermobile for crying out loud), sent me scurrying to the ceiling in pain over my wrist but pronounced good movement (as above with the no poo Sherlock comment) but did concede that movement was poor in my shoulder (well that tends to happen when you rip the tendon/ligaments and then are ignored when you go back 3 weeks later to say it is still as bad as when you did it and to go away).

The range of movement may be in normal limits but my limits have never been normal, for me this is not normal and bloody painful.

Why do I bother?

I am so peed off, it took me months to pluck up the courage to go, months to be able to actually fit it in around the boys and I came away feeling like I was being a moany min wasting the doctors time.

jennihen

Hello all. I'm sending you all good wishes from Cornwall. I haven't been posting on here for a while. I know some of you are facing real adversity and knock-back after knock-back. Really you have to laugh at the general low opinion of a disabled persons' abilities or the role of carers because there are guys on here who tested to the limit and still keep going.
I (jokingly) tried to give up Lupus for Lent which went well for a while. I've had severe walking issues which, thankfully, have resolved a bit. I'm mobile again but can't stand up or get up the stairs without a helpful shove. I could do with one of those chairs that pushes you upright!
Its the same old story - less pain and more mobility in the morning gradually tapering off as the day goes on.
On the plus side I have found and fallen in love with a house. I'm waiting for my first offer to be rejected!!!
Anyway best wishes to all of you and your nearest and dearest. Keep fighting the good fight
Jenni x

bevan840

I wish I could go home to Cornwall, this 'relapse' started not long after I moved (Sep 08) Is the sun shining Jen?