living with a chronic condition (part 4)

pipkin71

LameWolf wrote: »

OMG:eek: It's the sort of thing I fear happening - I never, ever wear anything on my feet at home, as even the softest slippiers HURT like hell. I hope your poor paw isn't too badly damaged.

Thank you LW.

It doesn't look very nice, but it doesn't hurt and has stopped bleeding.

I suppose luckily I wasn't wearing any socks so DD noticed. I don't really like slippers.

With regards your baking. I do exactly the same, batch cook when I have the energy, then spend the next couple of days recovering. Mind you, DDs enjoy cooking now, so I often supervise whilst they make all the goodies, then tell me they made it so they're eating it!

black_paw

Jazabeele our local number for PALS is 0300 1000 891 esdw-pct.pals@nhs.nt (sussex area )if can't answer message will call you back ...leaflet says...guide you to other PALS teams or services that can help you....provide info how to make a complaint...advise on how to view or get copies of your health records....advice on how to find the health service you need .doc/dentist....help raise any concerns you have with the right people. its a confidence service and will not speak to anyone without your agreement...you can use our service without telling us your name and address !
for : information..advice..support...a chance to have your say.
seems good

LameWolf

pipkin71 wrote: »

With regards your baking. I do exactly the same, batch cook when I have the energy, then spend the next couple of days recovering. Mind you, DDs enjoy cooking now, so I often supervise whilst they make all the goodies, then tell me they made it so they're eating it!

That's good that your DDs enjoy it. They ought to let their Mum have a share, though! How old are they, if you don't mind me being nosey?

There's only Mr LW and me, and bless him, he works full time as well as looking after me, so I feel it's only fair to try and make nice food for him.:o I have as many "aids" as I can think of in the kitchen - wheeled trolley, perching chair, electric gadgets of various sorts etc, but it's still mega-tiring.

pipkin71

LameWolf wrote: »

That's good that your DDs enjoy it. They ought to let their Mum have a share, though! How old are they, if you don't mind me being nosey?

There's only Mr LW and me, and bless him, he works full time as well as looking after me, so I feel it's only fair to try and make nice food for him.:o I have as many "aids" as I can think of in the kitchen - wheeled trolley, perching chair, electric gadgets of various sorts etc, but it's still mega-tiring.

DDs are 10 and 12. No Mr Pipkin.

I know what you mean about the aids. I have the perching stool and hate it with a passion, as it isn't very nice to look at, but very necessary all the same.

I did have to buy an electric can opener recently, as my hands have been getting worse, so that's one more to add to the list.

What a lovely DH you have. My DDs are great and help me out. I do feel guilty about it though.

tenmah

Careful_with_that_Axe wrote: »

jazabel You have had a rotten run of bad luck. You must have been particularfly evil in a previous life
May things change for the better for you soon.

Eeek bit harsh! Didn't Glenn Hoddle get sacked for saying something like that

Unity

jazabelle wrote: »

I just got back from the physio, who seemed to not know what to do with me when the pain is all over. He referred me to Hydrotherapy (which he told me he had done three weeks ago - so lied!), gave me some stretches then pretty much discharged me!

I am so annoyed. Physio was the treatment the Rheumatologist told me to do, and he has discharged me on my second visits without doing anything! On the first visit he just ran through my mobility etc, and today he poked me to see where I said ow!

At this point I am sick to death of getting the run around from everyone. I just want someone to take charge of my care and give me a break. I think I'm going to write a letter of complaint to the hospital about the terrible treatment I have been getting. I think I am going to request copies of my medical record letter from my doctor surgery, so I have the names and dates of doctors I have seen. Does anyone know how I go about formally requesting these, and if I would have to pay? I just phoned the doctors surgery, and she said the manager is on holiday and I would have to speak to her. When I wanted some stuff printed off from my GP at uni, they just printed it all off with no hassle at all. I do have the right to that info, don't I?

Because of the Data Protection Act, you should always be asked when you go in to see a consultant, if you would like a copy of the letter to your GP. You may well have to pay for copies if you go via your GP - but if you write to the hospital and point out that you were not asked (on any of the occasions when you have seen a consultant) if you would like a copy of the correspondence they should be happy to provide you with copies. You should also state you would like it noted on your file that you require copies of all correspondence in the future.

I hope this helps. .

bigzippy

pipkin71 wrote: »

I haven't, bigzippy.

The numbness has always been put down to the nerve damage I suffered when I had the car accident.

Well, I have Raynaulds (as well apparently now:rolleyes:) and my understanding is that essentially it's a lack of proper circulation to the extremities (nose, hands, feet) and that the blood flow is affected. I was just wondering if it was something worth asking your doc about, with regard to not being aware you'd bumped yourself etc..? Obv it's not medical advise, but maybe something worth chatting to your GP about. Saying that, there's not a lot they like to do about it anyway...:rolleyes:

LameWolf wrote: »

OMG:eek: It's the sort of thing I fear happening - I never, ever wear anything on my feet at home, as even the softest slippiers HURT like hell. I hope your poor paw isn't too badly damaged.

Thank you. Goes with the territory, I guess. I always get a flare when I'm stressed.


I always look at it like if someone breaks their leg (f'r instance) they have the thought that in 6 or 8 weeks, they'll be all better and back to normal. We don't have that to look forward to. Yeah, it'd make even the most cheerful soul depressed.

Actually, my reason for posting right now is On-Topic both for money-saving and living with lupus: I try and do all my baking in one fell swoop, to economise on the amount of time the oven is on, and as a result inevitably end up overdoing it, and spending the next 2 days flat on my back. How do any of you balance this? Do you say "s*d the leccy bill" and do your baking little and often? Or do you do like me and knock yourself into next Wednesday trying to save money?

Tbh lw I tend to just buy everything in I can't imagine sitting/standing in the kitchen doing all that, let alone making my brain and hands obey me for so long...:cool: Mind you, I barely manage to make a proper meal on a weekly basis so we end up eating a lot of takeaway :shhh: NOT moneysaving!:rolleyes:

pipkin71 wrote: »

I know what you mean about the aids. I have the perching stool and hate it with a passion, as it isn't very nice to look at, but very necessary all the same.

I did have to buy an electric can opener recently, as my hands have been getting worse, so that's one more to add to the list.

I've wondered about this perching stool business (I have no aids btw...I ask about help and [STRIKE]always[/STRIKE] tend to get turned down on the basis of my age (I'm "only 27")...very frustrating.:cool: Anyway, mil2b has got one but won't use it (quel suprise) as she says it takes up too much room in her (galley style) kitchen and she's worried about tripping over it or something (she's 3/4 blind too). If/when she completely abandons it I might think about pinching it and seeing if it's any cop for me... I do/did like cooking/baking but since I got ill/started trying to "manage my condition" I've barely done any :cool:

Unity

pipkin71 wrote: »

Thank you LW.

It doesn't look very nice, but it doesn't hurt and has stopped bleeding.

I suppose luckily I wasn't wearing any socks so DD noticed. I don't really like slippers.

With regards your baking. I do exactly the same, batch cook when I have the energy, then spend the next couple of days recovering. Mind you, DDs enjoy cooking now, so I often supervise whilst they make all the goodies, then tell me they made it so they're eating it!

Pipkin, your story really took me back to something I had totally forgotten about :doh:. Before I was dxd and whilst I was at uni I had a favourite pair of sensible boots - looked a bit like hiking boots or those made by Timberland (can't remember who did make them but it was about 15 years ago). Anyway I don't have any feeling in the heel on my left foot and one night after being in the bath, I noticed what I thought at first was a small round red freckle.

It turned out it was a hole! :shocked: I'd only been walking around on a nail, sticking up through the footbed of the boot. I thought it'd been moths attacking my socks:rotfl:.

I still have bother with the same heel and last week I bought a Rio heel smoother. It's battery operated and has two attachments with bits of crystal embedded in and these smooth away hard skin. It is absolutely great :T as I could sit all day with a Ped egg and not get the results I get in a couple of minutes with this :rolleyes:.

CWTA - The blisters are back - whaddya reckon - stress :rotfl:or sunshine? :rolleyes:

jazabelle

black_paw wrote: »

Jazabeele our local number for PALS is 0300 1000 891 [EMAIL="esdw-pct.pals@nhs.nt"]esdw-pct.pals@nhs.nt[/EMAIL] (sussex area )

Thanks very much! I'm actually in Essex, not Sussex. I've tracked down the one at my local hospital, so I will write a letter to them outlining my many issues!

Unity wrote: »

Because of the Data Protection Act, you should always be asked when you go in to see a consultant

Oh wow, I've never been asked. I'll add that to my complaint! And yeah, I was worried about having to pay as I'm rather skint at the moment - going through the hospital is a good plan!

hassie

Well hello :hello::hello:,
I wondered where you'd all gone .I haven't been on for a few days and you go off and leave me and I thought you where my friends ,hehehehehehe.

Well I am no further ahead with my work problem( sorry to newbies but it is on the last thread)Today I have received a letter detailing what was said in the meeting, I had nearly 2 weeks ago and they are making things up on it

I did ring dialuk as was kindly suggested but as yet nobody has got back to me.I really don't know what to do and the stress is making me bad .I can feel myself spiralling at the moment and couldn't move this morning for pain.At this moment I don't want to go back in for the rest of my notice but I think this would go against me if I did take issue with them.As it is my next shift is all day saturday and I just know I won't be able to move on sunday.I just feel like crying now and this has now put back all the good work the councillor had done over the last few weeks.

BIGZIPPY,
I'm so excited for you and not hearing all the chat is awfull.Is there somewhere else you all have gone,someone did say their son was doing something.Any idea ????

I am on facebook ,so if any of you want to "friend " me please P.M. me.

Take care all,I'm hopeless with names but nice to see some new faces.

Hassie xxx