Having a weepy down day today What with Biologics funding still not applied for then had steroid injection Monday was looking forward to two weeks relief of symptoms and it has not relieved anything. Previous one worked within 24hours.
So tearful day.
X
I have had a lot of those days recently, and I know it's no use saying cheer up, it will be fine. I can say that sometimes it takes a few days for a steroid injection to work, so don't give up yet. But it is a wretched disease, and chooses the moments when you are down to swoop in, and overwhelm you. You deserve a bit of tlc, give yourself a bit of a treat, and if there's noone to do the honours, look after yourself!
I do hope you feel better tomorrow, and the steroid finally kicks in. Virtual hugs....Mavis xx
Hope tomorrow is a better day!
I'm sorry. I know how that feels. Sometimes it's a good thing to weep and and let all the emotion out.
Hang in there.
Sending you a huge hug.
Cas ☀☀
Poor you 
I had a steroid injection in December and it took fully three days before I saw any benefit whatsoever. All previous injections had worked within 24 hours. Had my other shoulder injected last week and started to feel some relief in less than two days so hopefully you will begin to feel better over the next couple of days.
Stay strong. X
Thank you . Yes I normally get relief in 24 hours. Just concerned I have had to many so they are not effective.
Xx
Hope today is dawning brighter. But if not, then do allow yourself to complain about the hand you've been dealt. So rubbish that it's taking so long to get your biologics started so not surprised you feel low. It's a lot to put up with. My dog has learnt to keep out of the way on low days as he doesn't appreciate being wept over, as he's a very doggy dog and prefers chasing things to being cuddled.
I am giving her till Tuesday when she said she would phone me.
I have made it clear I will complain. Three different versions of where my file has been is hard to believe. I no longer have any trust in her. Sadly.
Oh my darling,i fully understand where your coming from and i hope today is better for you. I hope your weepy day doesn't last long sweetie. Big gentle hugs coming from me with oodles of love.xxxxxx
Thank You Sylvie How are you and your H today?
love to you both xx
Hubby is not too bad and i have to see dr tomorrow re; blood results
x-rays are okay.xxxxx
Aww Smithfield I can appreciate how you feel-I felt like that when all my RA meds were stopped for 5 months- I just couldn't see an end to it. When they finally let me have a steroid jab it took a few days to kick in.I was so disappointed as when I had them in the past they had worked quicker than that.
I hope that yours will start to give you some relief soon.But today is all about you.If you want a weep then you carry on and do so.Just indulge yourself in whatever you want.Some tlc for you today Smithfield,and if you are able to and feel up to it go out and get yourself a little treat.
I am having a weepy day myself today but not the same weepy as you..Mine is my left leg ulcer.Everytime I think it has dried up it starts to weep again.I am off to my renal consultant today - real bit of eye candy -and there I will be in my big Velcro boots and compression stockings!! Boy is he in for a treat! Norah Batty's got nothing on me.
Take care of yourself today and hope the steroid kicks in for tomorrow,
Thinking of you.
Crusee
XXXXX-- lots of kisses.
Oh Bless you Crusee, Love the image of the consultant [eye candy] and you in your space boots. Sometimes I open the front door for a delivery and think that poor bloke needs to lie down in a darkened room after seeing me first thing in a morning.
Thank You for caring and making me laugh.
Good Luck at the appointment.
xx
If the injection does not kick in keep in touch with rheumy department as they may allow your GP to prescribe a short course of oral steroids to see you over until funding is approved. I found that the injection was not always effective after having had a number of them. Farm
Thank Farm seem to have lost my previous reply.
I take 5mg of prednisone daily I am allowed to increase if need be. But that is my GP's view will give it a couple of days just in case then check with Rhuemy.
Take Care.
I have just got back in the house after my appointment today,which actually turned out to be a disappointment.
Approx 2 weeks ago I did loads of blood tests at my GPs in readiness for today and they somehow seem to have gone astray so the consultant couldn't provide any update on the state of my kidneys. I had to do repeats which isn't a huge problem but I could really have done with knowing something today---ggggrrrhhhhh!!!
I already felt a frump in my diving boots,padding and Norah Batty bandages,and when I was getting from the car into the hospital it was raining so my hair was soaking wet and stuck flat to my head.I looked like..........well I looked. If the Adonis consultant wasn't going to be scared today he never will be.
The final straw came when the nurse that called me in from the waiting room says "the doctor has 2 medical students with him today,do you mind them being in on the appointment?" Well you can't say no can you ?
I then went into the room looking and feeling like Compos sister and I was greeted by two very young,very pretty young ladies.Not a hair out of place and make up fully intact.Straight off the front cover of a magazine. They must have wandered where the hell I had come from.I didn't stand a chance!
I don't think Adonis consultant will be asking me on a date any time soon.
Oh well it's just as well my husband was with me and he took me for a meal on the way home to save us cooking when we got back- at least he loves me as I am,diving boots,Norah Batty legs, warts and all.
Bless him he's my hero.
Hope you all had a good day and same for tomorrow.
Crusee
XX
Oh crusee the appointment from hell. But again made me laugh. Ever thought of writing a novel.
Xx
Smithfield
Hi yes it was the appointment from hell but there is also one bit I didn't mention.When I went for the extra blood tests ,held out my arm,and sat through the procedure but then she couldn't get my arm to stop bleeding.15 cotton wool balls and an hour later they finally let me leave the bloods dept.I take warfarin daily for recurrent dvt's and my level must be fairly high at present but they wouldn't let me go until I stopped bleeding.I certainly made my presence known there today.
They will be locking the doors next time they see me pull into the car park.!
And yes I have often thought of writing a novel or something it's point 4 on my "get rich quick plan." Got a couple of other tricks I want to try first-lol.
Glad I was able to bring you a little cheer let's hope steroids start to work tomorrow.
Crusee
XX
Cruiser, my love. You are a walking disater .Have you considered a Government Health Warning label when you step outside.
Again another good laugh.Thank you.
You should be bottled as a pick me up tonic.
Xx
I tried to get one but failed the medical !, ---lol
Any luck with the steroids today?
Crusee
XX
No still the same old pain
And to top it off where I lie on my back at night, it is the only way I can get comfy . I have a pressure area on the base of my spine.
Got Doctors Tuesday till then keeping it covered.
It is never just the disease is it? It is the add on's that come with it.
Xx
Ouch Smithfield.They certainly know where to pick their spots don't they these sores and ulcers etc? Must be really awkward on your spine.Ive never had one of these yet so I guess it's just a matter of time so I can't say I know how you feel ,but I am thinking they must be similar to leg ulcers.( sore stingy etc)
You're right it isn't just the disease it's all the other bits that seem to come along with it.I often think I would cope better without these leg ulcers Ok I know they're not a huge issue on their own ,but sometimes on top of everything else they're just enough to push me close to the edge.
We all have enough to contend with without all this other stuff that comes with it.,and you seem to have more than your fair share at the moment.Just keep it covered and clean and with you seeing the doc on Tuesday I hope they can do something to ease it for you.
Sleep has always been a means of escape for me in the past if there's ever been something I don't want to tackle at that time, but I can't even rely on that happening nowadays.A good nights sleep is a distant memory. I was going to say dream of but I don't sleep long enough to even manage to do that.
Easy for me to say but try to get as much sleep as you can,you need your strength to tackle the big stuff that's also going on. I really hope tomorrow brings you a better day, and tuesday isn't too far away before you see the doc.
Take care Smithfield and let us know how you get on.
Maybe we will be in contact tomorrow.
Crusee
XXX
Hi again Crusee. The dreaded lack of sleep syndrome. I love my bed and use it to escape. But sleep in it anything but.
I have changed the mattress, decorated it a light relaxing ,calming pale blue, changed the wood furniture to white. And still sleep evades me. What is it with RA and sleep, ok it is painful but we are used to that. I try not to worry about it now because it does not help.
Back to the ulcers and the rest it is just something else to do is'nt it. It takes ages at the best of times to get dressed now the two dressings on my feet need doing and the one on the bum.The sun is sinking over the horizon by the time I surface. Then medicine time starts.!! But I am not going to go there.
And you are in a similar position with your legs.
But today has been a good day, ok have not walked much but managed to get some shopping in. My granddaughter, a frequent visitor is staying tonight we enjoy a really close relationship and I get to feel important because I help with her homework .She is 8
Hope you are having a good weekend.
Xxx
My issue with sleep at the moment is my Norah Batty bandages.I haven lymphoedema,as well as my ulcers.I I have nylon toe caps, two layers of foam padding,dressings and then compression bandages on top of that.The weather is now getting generally warmer and I find it unbearably hot in bed.We are down to our lightest tog duvet and still I have, to stick my legs out of bed or sleep on top of the covers.This then disturbs hubby so I usually give up the ghost and go downstairs.He needs a good rest as he spends the day looking after me and doing a lot of the housework that I can no longer manage.
Doc has given me liquid morphine to help at nights.Certainly does the trick but I am led to believe it's habit forming and very difficult to come off.I don't need any other problems on top,of what,I,have already soI only use it when I am really desperate.
I am glad you have had a good day,so enjoy your evening with your grand daughter and hope you get a gold star and 10/10 for the homework.
Take care
Crusee
XX
Cruiser, you really do not have it easy.All those layers even in the mildest of weather must be tortuous.
I sleep with the covers folded back from my feet as I cannot bear the weight
I have tried a fan in the bedroom ( have you) but they are so noisy. So that went.
Liquid morphine I have it prescribed and agree with you totally about the risk of addiction I also have patches which are probably just as addictive
It was the liquid causing the crawling feeling and the extreme itch on my legs so no longer take it.
I know the leg ulcers will eventually heal, but what about the lymphedema?
Can anything long term be done.
Take Care.xxl
So you are obviously up and about as well?
I have just decided to come downstairs after an uncomfortable hour trying my best to get to sleep.My hubby has been getting me pain killers and drinks to help me but no but I have gone past sleep now.
Sat in lounge watching Northern Lights with a large glass of wine.(maybe send me to sleep) Not the proper way to do things I know but I am so p****d off with all this at the moment this seemed like a great idea.
Have tried the fan in the bedroom but like you say it's noisy.
Lymphodema is being treated -that's what all the bandages are about but the ulcer is leaking and holding up the next step with it.I just wish these legs would dry up.
2 weeks ago they had done and for whatever reason they just suddenly started again.Oh well keep on taking the tablets as they say -and believe me there's enough of them my bathroom cabinet looks like it belongs to a drug dealer.
In the meantime I will have another slurp.......
Crusee
XX
We are turning into wine drinking vampires.xxx
No but thank you for asking.xx
Think I just replied to this on farms thread.not sure what I am doing tonight.Adonis has got me all in a fluster........
Crusee
XX
Oh Crusee i can just imagine you dressed up to the nines with your socks and boottees on darling.xxxxx
Scary huh??
Crusee
XX
It has just registered what you said in another post about the Northern Lights. I think I would get up reasonably willingly to see them.
But if you live in the area it is different .
Hope you are well as you can be.xxx
Hi Smithfield,
The northern lights I was watching last night was the one on tv, an old programme with Robson Green,Nicola Stevenson,Sian Reeves and something Benton ,the chap who used to be in the "brand new customer only" adverts (can't think of his name).
I live in mid Wales so nowhere near the real northern lights I'm afraid,but they are on my bucket list of things I would like to do.The only way I would see the northern lights from here is if I had overdone the glasses of wine one night and whether they were real would be questionable.-- lol.
Had a reasonably good day today and lymphodema nurse coming in the morning so let's hope the legs are behaving themselves and that the ulcer has dried up a bit.Goodbye Norah Batty legs!!
Hope you enjoyed your quality time with your granddaughter,and that your steroids are working now.
All the best,
Crusee
XX
I can stop the envious thoughts.like you would love to see them. But Wales is always beautiful we have had some wonderful camping in the Gower and Tenby when all the kids were younger.
Camping that's a thing of the past.
Hope it is good news when the nurse calls.
Of course steroid do not help the quality of our skin.
No joy with the injection at all. But did have a good weekend. Weather here in Kent was lovely not to hot.
Let us know how the legs are doing.xx
Morning Smithfield.
You're right Wales is lovely,and I don't always appreciate it as I see it every day.
Camping is a definite no- no for me now been some years since we spent the night under canvas.We have a caravan and used it all year round until a few years ago.We still use it in the summer but it is getting to be hard work now especially for hubby as he has to do all the setting up and put the awning up on his own.Its a big caravan so not an easy job,and I am not much help anymore,more a hindrance if anything.
Anyway nurse has just been.Will have my Norah Battys a while longer.The ulcer on my right leg is clearing up nicely,and the leg is dry.My left leg was dry but started leaking again about 2 wks ago,don't know why it started up again.I have antibiotics just in case it was an infection that caused it.If it's not one thing it's another! I have an appt in Cardiff on 1st June to see Prof Harding,(apparently a top dermatologist in the UK,) who will have a look and see if there is anything more that can be done.There is such a lot of tissue damage to my legs they look as if I have been in a fire.I just hope that I can get these bandages off soon as they are sooooooo hot.So I suppose today was reasonably good news all things considered.
My nurse mentioned she had just booked a 3 day break away for her and her husband,and guess where to? Iceland in January to see the Northern Lights!!! How spooky is that?
Glad you had a good weekend even without the steroid jab being effective,and have a good day today.
Crusee
XX
Spooky home she sees them .
Well on the positive side one has cleared and you are going to see the top Prof.so hopefully he will be able to do something to clear them for the summer it must be unbearable.
I did think of you on Friday. .I had lunch with my stepdaughter and she was bemoaning the fact she has not shaved her legs for 7 weeks, since she gave birth.!!
I fully understand about the pressure on your husband. I can mentally organise but physically I am useless so all the heavy tasks fall to him. I get so frustrated.
Have a good day, we are stuck in till about 1 waiting for a delivery but hopefully will get into the sunshine this afternoon.xx
Always the same having to hang about the house on a nice day.Hubby is in garden trimming the shrubs and I have been overseeing the job from the bedroom window (in an advisory capacity you understand).Ive told him he's cutting too much off ,he says not .Hmmm when I married Mr Right I didn't know his first name was ALWAYS!!,
It'll be a fun day.
Crusee
XX
Oh dangerous ground the I am not telling you what to do but if you just....
That kind of comment? My husband has learnt to ignore me a do his own sweet thing which is one advantage of having limbs that work. I am sure yours has learnt a few tricks as well in pure self defensive.
The parcel Crusee, I thought I had ordered a small round coffee table. It is huge big enough.to use as a dining table . Another error of judgement and a begging email to the company.
My husband just raised and eyebrow well both he cannot raise just one.
Early night before I do something else I will regret.
Take Care.xx
Hahaha well it's true what they say size is important!Hope your begging email sounds desperate enough to get it changed or refunded.
I have been on eBay today-always dangerous- idle hands and all that! I have ordered a bbq/ smoker for the garden.Should be delivered tomorrow or Wednesday, so we will see what turns up.I have warned hubby what's coming.He too has already decided we don't need one.We already have a bbq but I thought the smoker was a novel idea.
Probably turn out to be another "handy gadget" that I couldn't do without and then end up in the back of the shed.It wouldn't be the first one.
Have your early night, hope you get a good rest and that tomorrow is a good day.
Crusee
XX
So you will be able to do smoked ham, kippers and lots of other delights. I might just pop down to Mid Wales.
If it doesn't hold the smell in and you do kippers you will have a few moggies joining you.
Ah.the beauty of the English summer.
I really hope you enjoy it let us know how you get on it sounds fun.
Xx
In theory yes,it's a long way to come for a frizzled banger but you're more than welcome.
Never thought about the moggies, there's quite a few round here.Have to buy a dog!!
Crusee
XX
Beware you could end up like the old lady who swallowed a fly.
Cannot think what comes after the dog.
Xx
Hope y have a better day tomorrow take care xxx
Thanks Popsmith. Have you started your biologics yet?
Oh please don't get despondent. Getting assessed and hoping for funding seems like a torture which has been added to your already pain ridden body. I had to come off steroids in order to make my symptoms worse in order to achieve the necessary funding request. Its a sad state of affairs that you have to try and induce as much pain as you can in order to qualify. But I guess there is reasoning behind it somewhere.
Thankfully I did not have to do reduce my medication, i think the reason is a tight criteria and funding. While it must be difficult to reduce your medication at least the team are being flexible to ensure you meet the criteria. Hard Work is'nt it?
With me I have biologics in my brain as the Light at the end of a long painful tunnel. So all this your file has gone missing and other excuses is making me so frustrated.
hopefully won't be long now.
Oh that is so frustrating. I thought it was all on computer these days. I remember way back files were huge and many did get lost but now all I have is a sheet of paper which is given to the doctor who calls me up on the computer. This is obviously not how it works for you. It just adds to your stress when something so ridiculous happens like this. I hope it gets resolved soon.
That's the daft thing I have a huge thick file but they all have computers on their desks which they use as well.
I have given up trying to understand the system.
Xx
Mention legal action and I will bet that file will reappear pretty damn quick!!
Crusee
XX
Well Kai.
I have already considered both these options but they are a bit further down on my "get rich quick plan"
The no 1 spot was to be modelling,but given my experience yesterday and my Norah Batty legs I may need to reconsider this career path.
My no 2 spot was the euro millions lottery.I have done a few calculations this evening and I have decided that maybe I need to invest a bigger stake than £4 per week to get any sort of a decent return.I am not holding out too much hope on this one,and thought I would hold fire with booking my round the world cruise.
Now I had the novel at spot no 4 followed closely in 5 & 6 with the movie and documentary.Just to get things straight I dont normally come out of my dressing room for less than 20 grand these days but I am open to negotiation.A toffee doughnut and a cappuccino could easily swing it..
Which leaves me with option no 3.I am going to have a stab at being a politician.How hard can it be?
Just think of all the cash I can make on expenses I can rake in a packet .And I get a say in what happens.So I haven't closed the doors completely on a novel/ movie or documentary we will see how this next career path progresses.
As for my other half and the laughter, I think it may be a bit of both.I also think he has me down as a lost cause.
Bless him.
Take care
Crusee
XX
Love it . But should of read it first before I did my post. You have answered the question.
Two suggestions a Nora Batty look alike .
Or a stand up comedy. Or sit down depending on the legs that day.
Xxx
It would have to be a sit down Smithfield.I can't stand long enough to boil a kettle these days .Think I have managed to pick fault with most ideas in my get rich quick scheme? I will just have to resort to doing a proper days work.
You're suggestion of a hubby/ partners page is a good idea.I am not sure I would want to read what mine said about me if he was really let loose,he may tell it how it really is on a black moody day. I also felt guilty about slagging off the animals its not fair to compare them to me when I go off on one. They don't deserve that.
I hope you have had a better day today and steroids starting to do the job.
Take care.
Crusee
XX
Thanks Kai-ha ha ha.
There's a lot of work gone into your reply and you've obviously been very busy doing your Judith Chalmers bit.
Looks like youve got my holiday packing all sewn up, spending money and travel arrangements all perfect.All the hard bit has been done.I really wish I WAS off on a cruise but until these legs are sorted Im not going anywhere.Still I can sit and dream,and if the legs improve soon we can get booked to a Greek island somewhere (our favourite hol destination)
Sorry if I caused an incontinent moment,now we can see just how good these tena lady really are !!!stretched to the max by the sounds of it.!
I will warn you next time I am off on a literary funny moment just so you don't get caught short.
I have been in training for the political career this afternoon I didn't think I could do any worse job than the ones who are already there.Not sure which party to join though.Hubby reckons monster raving looney party could do with some help.I have started reading Jeffrey Archer novels today to get a few ideas but then hubby reminded me of where he ended up so maybe I should stick to a reputable "how to be a politician " handbook.--lol.
( I don't think politics are going to be my forte somehow)
Hubby is a gem bless him,we have a lot of fun together but he also tolerates my black moods and he has to be an absolute Saint on those days.I don't envy what he has to put up with then I can be a proper cow ( no offence to the animals).I certainly wouldn't put up with me then.
Right I will go and print off my money and tickets now in readiness.enjoy the rest of your weekend.
Crusee
XX
Maybe there should be a page for husbands/ partners who have cows like us to put up with. I do not know how my husband copes when the clouds descend.
I realise by writing this I have used a defensive beautiful beast to describe me at my worst.
Out of interest was the being a politician on the get rich list?
Xx
Hi Kai Oracle of diets what do you know about avoiding the deadly nightshade related veg?
Trouble is I love potatoes.
Hope you are well.
Xx
OR.... if they don't cause an inflammatory response it's ok to eat potatoes. The same applies to any other food.
Ha ha thank you Kai.I have my moments.
You have obviously seen me whizzing round the 24 hour Tesco at 2 am in the morning on my scooter.Its like Brands Hatch and nobody else around at that time of night- its great! But they have asked me stop doing wheelies on the corner by the deli as I keep knocking down the display. I must work on my reversing skills as well.
Have a good day.
Crusee
XX
I have just written a long reply and lost it.So this is the abridged version.
Thank you so much Kai for your exceedingly comprehensive reply. That is what I love about this site the sharing ,the humour and people who are genuinely interested and caring.
I am used to a gluten free diet thanks to the celiac disease and apart from the odd tantrum over iced buns and fruit tarts plus restaurant's who have never heard of celiac 's and have no intention of doing so I cope fine.
Had to give up red wine cheese and tuna due to the antibiotics for latent TB. I have never drank red wine but of course at I want now is a poughmans and a large red.
But I have three autoimmune disease's Lupus, RD and celiac I think my body is telling me something so I am going to try without potatoes, peppers and tomatoes plus the assoc.spices . I am not knocking conventional medicine I gratefully swallow them like smarties. But I also want to do something that puts me in control.
I can only try it. If it makes no difference it is back to the Mediterranean diet for me. Which in all honestly just needs tweaking a bit to leave out the nightshade veg. And as you and NMH's say I can always go back to them if nothing changes.
So hopefully this posts thank you again for the time and your lovely reply.xx
Well I did not exactly get down on the floor, but my 6month old grandson has taught me a few tricks on how to throw a rigid non co-operative back .And his 3 year old cousin is a past master of the standing rigid on the spot tantrum.These traits were inherited from 'that' side of the family you understand.
I was in a unnamed supermarket a few weeks ago, I bought a salad from the salad bar, we went into the Caf'e my husband bought some lunch and a couple of drinks. We sat down I started eating my salad and the mangeress came across bosums quivering. And said you cannot eat a picnic in here. Picnic!
Not a Pimms ,cucumber sandwich or strawberry in sight. I pointed out I had bought it in their store as the gluten free option in the cafe was a jacket pot. ( ask any self respecting coleac what they get offered when people do not know what else to offer) it becomes rather boring.
I replied supermarkets catered only for the masses( no offense we all use them) purely for profit. And as g.f food has a short shelf life and very few buy it it is not on the list of priorities as all they were concerned about was profit.And do not get me going on what you have done to farmers and independent small businesses. And none of your signs are in Braille( my mam is blind). Then I started going on about disabling societies ( I did not sit through hours of sociology lectures for nothing). My husband said. Perhaps you should of just had a jacket potatoe!!
However, I did notice a sign up a few weeks later saying Gluten Free sandwich's available . Could be pure coincidence.
I digress, water good point the spirt Is willing but the flesh week. I start everyday with every intention of drinking more water. I know the theory it is good for everything hair, kidneys, skin if fact everything you can think of.
But it is so boring. I promise I will start tomorrow. I have even downloaded one of those water apps as a form of encouragement . I just ignore it.
I have started the non nightshade diet today.
I totally agree it is all about balance.
Take Care Kai.xx
That's fine but they'd have to bring their own wine.
(For clarification see conversation on weepy thread).
Hope you've had a good day.
Crusee
XX
Cannot find the thread. Are people joining us? Xx
It was to put Kai in the picture and tell her that if camera crew came along they were on their own as far as the vino was concerned.
Crusee
XX
Totally we could be paid in vino.xx
Hmmmm now that's a thought.wont have to worry about replenishing the wine rack!
Crusee
XX
Love your imagination Kai
I keep expecting a message from admin.saying "Keep to the Topic".
I am moving in with Crusee she has a smoker.!
Not a smoker as in puff puff ugh.But a smoker for food.
How posh is that no longer through another shrimp on the barbie but Do pop in and have a smoked herring.
Wonderful.xc
Throw.
Ok my first drink tomorrow will be a glass of hot water plus lemon slice and I will add more water during the day.
Thank you you really are an Oracle for making food consumption imaginative.
Xx
Are you skip reading my dear Kai. I said not smoking as in puff puff. And here you you banging on about encouraging herrings and shrimps to smoke.
That is imagination
But back to the subject Crusee's smoker is also a Tardis she got a bargain there.
You having a good day? Xx
As long as Johney Depp in full make up up plays my on screen husband.x
I bagsy James Martin.( He can cook,as well)
Crusee
XX
Your choice. I did have my husband in mind on a good day and even in a Saville Row ( not that he has one) he looks like Compo. Absolutely no offense to you just wondered if you want to compliment the Nora Batty look.
I do free returns if he is not what you are looking for.
I will say he will take up less room than the smoker.
On that subject have you tried it yet.
I am trying to think of someone Kai can bring I think it will have to be cat related.
Xx
Oh bless him.no offence taken.
Haven't tried smoker yet probably won't for a couple of weeks at least.just assembled it yesterday to make sure all parts had been supplied.
Smoker hasn't been mentioned today.He wasn't cross but he did remind me that it was only a couple of years ago,that it was me who insisted we go gas as charcoal was dirty and messy and took a lot of clearing up after and that gas provided instant heat.I had forgotten that so I am now thinking of reasons to justify my latest purchase.Is humble pie better with gravy,custard or just served with a side salad?
As for Kai well what about Cat Stevens, or the guy from Red Dwarf who was the cat.They would be purrfect,
Crusee
XX
She seems an agreeable sort.
It will be fun but if we get rid of all our ills and aches and pains. We might be completely different people to what we are now and we might not like ourselves and others might not like us. And we would miss the friendship of this page. Oh a difficult decision.
I think I am allowing myself to become profound .And my brain cannot cope.
Xx
Been expecting the same as Smithfield said re the topic.but at least it's weeping like you said.
It's just your incontinence we have to worry about. Hee hee......
Crusee
XX
Well this thread has woven everywhere and made me laugh so much . While I was really down the other day. I am really pleased I posted it has lifted me and cheered me up enormously.xx
Well smiffy so glad we have been able to bring you back up there.
I think another virtual vino is in order later.approx 7.30 shall we say?
The sun is sure to be over the yardarm somewhere.
Kai are you joining us?
Plus points-
Don't have to find seat in busy pub
Don't have to drive to get to pub or better still drive home.
Don't have to get changed and plastered in make up.
And there must be loads more.
Slurp later.
Crusee
XX
Good one.
Excellent reasons for not going out.
Bottom Alert .
Nurse has just called. and there was me thinking I was going to attend clinic. Update cannot grade it as cannot see the bottom of wound. So dressing slapped on. Mattress topper and cushion ordered. Coming back Friday oh and no showers. Ugh!!!
Just raise your glass or glasses if Kai is in and hope it does not affect the biologics.
What a drain on health resources.
Cheers
Xxx
I hope this is not to much info at dinner time.
Had dinner so not a problem- haha
Hope this doesn't cause a set back with meds after waiting so long.This is not what you needed.
I can sympathise with you on the showers episode.Every day when I get in the shower I have to put on my legs what I call waders.They are long thick plastic tubes which have an elasticated top on them to protect my dressings and bandages.Sexy or what?
Perhaps you could do a makeshift version with some duck tape and a plastic bag? - joke!
It's only once a week when lympho nurse comes to my house that I can cut off all the bandages and have a full shower.What a treat,I am in there for ages.I don't feel as if I have had a proper shower on the other days.
I hope the mattress topper and cushion will be of help to you,and that you can manage some sleep.I seem to have been asleep a lot today,dropping off at odd times and being completely floored with fatigue .Thats why it's taken so long to respond to you.I am wide awake now at 2.30am watching more crap on tv to try and get sleepy.I expect I will be as grumpy as hell tomorrow.Look out hubby!!
Hope you can manage to get some rest and that tomorrow will be a good day.
Crusee
XX
Thanks Crusee, Fingers crossed on meds, my skin after years on prednisolone is not good. So far this year ulcers on feet and burst bursit on sole of feet, still being dressed. But what can you do.!
The wadders!! sexy not { unless you are into rubber} [ apologises admin}. They do not even do them in a choice of colours or with a bit of glitter and getting it on and off nightmare!. Plus you have to balance in the shower, not easy.
I wonder if there is a bottom cover, otherwise i am stuck strip washes are not the same. Hair i cannot stand for long of kneel! I can book hairdressers once a week but it needs washing more frequently. Any tips.?
I had another sleepless night despite being tired but did not reach for my phone exercising some control over the blue light which causes sleep disturbence.
Please excuse spellings I think the laptop has had a bad night.
Have fun.
xxx
Morning.
Sorry to hear you had a bad night too,hopefully you can have a catch up nap during the day.
You mentioned your skin was not good after using prednisolone,what exactly does it do to you as I have recently started on it and would like to continue taking it for as long as I can.I really don't want anything else to cause me any more problems.?
With the showering what you need is some sort of long waterproof skirt that doesn't let any water in from the top so not to get on your skin in the nether regions.Dont know if there's anything like this on the market at the moment will let you know if I see anything.I am going out to gave my kegs dressed this mornings no so will ask district nurse if she knows of anything suitable.
Have as good a day as possible,
Catch you later.
Crusee
XX
Thank you Crusee
Did not intend to worry you. I am talking about 24years of usage for the Lupus. And I know all the horror stories around steroids but you have to weigh the balance.
The best way to describe my skin is like tissue paper so very thin. But just to reinforce this it is after a lot of years. And without taking prednisone I honestly believe I would be in a lot worse state now.
Take Care. Hope the legs are a little better when they are dressed.xx
Hi Crusee I have worried all day that I have raised your stress levels 're. Steroids. I really hope not.
How we're the legs when you saw the nurse this morning.xx
No you haven't worried me so no problem.It was just a question as I had not heard of this side effect before. -- just covering all bases.
Good news on the legs front.The nurse who did them today hasn't seen them for a while and she noted a huge improvement so I am pleased with that.I did have a problem tracking down some special dressings that had been ordered on Monday by lymphodema nurse which appear to have gone missing, so have spent most of the afternoon chasing after them but that's another story.
I asked nurse about shower protection for your pressure sore.She said they have nothing that the district nurses have access to at the moment but will make enquiries,so I will let you know if they come up with anything.So looks like we are back to bin bag and duck tape - ha ha.
She told me that she was going to her weekly hair appointment after she had done my legs,she had got a half day off today..I asked how she managed weekly and she said her hairdresser uses Moroccan oil on her hair and didnt need to touch it for a week.If it gets tatty looking she sometimes puts it up,for the last day but other than that she doesn't need to do anything to it.Now I have never used this I'll so I have no idea if it works or not so wouldn't want to suggest you use it.I also have no idea of your hairstyle.But it may be worth mentioning to your regular hairdresser to see what her opinion is and if it suitable for you.
Right Smithfield glass of Pinot Grigio is poured and ready for partaking- cheers.
Crusee
XX
Enjoy the pinot. I am delighted that she found a huge improvement in your legs. That must of given you a huge lift. Hopefully the end is it site.
Thank you so much for doing the digging for me.My hair is straight and fine but will certainly ask about the Morrocon oil.Anything to feel reasonably presentable.
Bought some bio oil today, I have very dry skin on my eyelids and the surrounding area.I have put on a small amount, and I have to say I am sitting here feeling a bit like a chip.
You do not have much joy with things even
Bring to hand when you need them what with blood tests going missing and now dressings.
But it sounds as if you have had a positive day.
Xx
Yeah I am beginning to think there is a conspiracy theory going on but it must be complex and there must be a lot of people involved.No probs with the digging glad to be of help and if they come back with anything I will let you know.
I have tried the bio oil as well.Sticky isn't it and expensive ? Felt like an oven ready turkey at Christmas.I have to say that I wasn't terribly impressed with the results for the price I paid for it , but it may be different with you with your eyelids I was trying bigger parts and used gallons of it.
You mentioned your new pillow earlier .Is there going to be any room for hubby in bed as well.Not sure what my niece does with hers but I Think she straddles it with one leg and leans on it.Well whatever you do with your lets hope it helps.
Have a good nights rest Smithfield.
Crusee
XX
Well Kai I am horrified (ha ha). At that last utterance!
Still it doesn't contravene trade descriptions it really is toilet water,but think I will stick to my Opium and Happy for now.
All this silliness hopefully has brought Smithfield out of her rut.we have had a good snigger these last couple of days.
Crusee
XX
And there was me thinking I was giving to much info in above post.!!
Xx
That was for Kai and her loo utterances.xx
Sorry you are having a down day, I know they are awful so understand how you feel my last steroid injections worked quite well but the previous ones didn't do anything, if anything made pain worse. I have a 'go to' place when I am fatigued or low, I watch Harry Potter films, draw the curtains and transport myself into it's magical world! I know every word by now but it still helps me escape. I'm not saying you should watch Harry Potter but if there is a film you love or better still a series of films or box set, find which ones will transport you elsewhere and see if it helps 
hope you ar feeling better soon x
Thank you so much yotelcom. When the cloud descends it is a bit like a fog. I am feeling a lot brighter now .Thanks to this thread following a funny path.
Harry Potter is enough to have me running from the room screaming. I cannot understand the fuss my husband, children and grandchildren devour it with pure joy. Personally not for me.
But I totally agree we have to somehow find a way out of ourselves. I read a lot and that helps, posting on here helps enormously .
I don 't know about you but I get all excited before the shot, plan things I can do once the adrenalin kicks in and masks the pain. This time it was like a damp squid I kept hoping perhaps tomorrow but no nothing. At least mine did not worsen the pain as yours did.I have been on long term steroid usage for the SLE. as well as the RA I guess that does not help.
Hopefully next time for both of us and others they work as your second one did.
May I ask how long after the failed one did they agree to the second.?
Thank you and take care.
Glad you're feeling a bit brighter I had both shoulder joints injected July 2015, I dont believe the doctor who done them knew what she was doing to be honest, it was so painful having it done which has not happened before, my usual doctor didn't do them. This time I had them both done again by my doctor 13th May 16, no problems having them done, no pain after and I am feeling quite a lot better but for how long I dont know! Oh, I almost forgot, my GP done one shoulder joint injection when I was in agony Oct 15. Thanks
Yvonne
x
Hi Yvonne. Glad you are feeling better since the injections, as you say you do not know how long they will last. I try to block the thought from my mind, if I linger on the injection wearing off, it takes away from the pure pleasure of a pain free period.
I think some doctors rarely give injections possibly as they see it as a nurses job ,they become outof practise so unfortunately it hurts.
Take care
You are so organised you think of everything!
Did you bring after eights?
I do a mean liqueur coffee.
Crusee
XX
I fancy a tequila sunrise plus the fruit (healthy extra ). In a round glass with a long stem. I think for nibbled chocolate coated ginger ( the ginger is good for inflammation dark chocolate is good for the heart. ) actually I will bring them I have some from Christmas going a bit white but edible).
On a diffirent topic my body pillow has arrived. It is huge and I mean huge!!.
No idea where the🐱🐱 will sleep. And if I do not emerge tomorrow could someone kindly alert my husband that I have been swallowed. He just might not notice.xx
Hi girlies!
Been out of action most of the day what with hospital appts,leg nurses and missing dressings at pharmacy and other things!, gggrrhhhh!!
Hmmm ginger choc sounds good but I am partial to a Singapore gin sling.This is starting to sound like a classy soiree not a back garden smokey party.Methinks I will need to dig out a decent cocktail dress.Its been a few years since I last got into one of those.Steroids don't help - can't get jeans past my kneecaps anymore Norah Battys don't help either.! We will also need to get some decent music sorted .Kai- over to you.No status quo please!!
Crusee
XX
Worry not wear pj's as long as Nora Battey legs are comfy.
What exactly is in a Singapore Sling sounds very tempting.
I wait with interest for Kai's choice of music. Might be chamber music given her fetish with loo's.
Xx
Smiffy,
This is a cocktail,of gin Cointreau ,pineapple juice and a few other things thrown in for good measure.From memory I think this was a signature drink of the famous Raffles Hotel in Singapore. Would like to say I have been there, but no I haven't..
I too am waiting for the music choices,Kai has been very quiet tonight.I am assuming she is concentrating all her energy on this project.
I thought she may have chosen Boogie Nights but it's more likely to be,Boggy nights .Oh well we will see what she comes up with.
Hope you manage a nights sleep tonight,and tomorrow's another day.You Will need all your energy tomdig that L B D out of the closet.
Crusee
XX
Will tell you about the body pillow later going to give it one more night before making a decision.
Just a party update I have ditched Johnny Depp having read today's news.
Xxx
I know I saw it in the Daily Mail yesterday on pg 13.mI thought hmmmm and he has certainly lost his sparkle even in full make up.Was going to send you a message later but you have beaten me to it.
Sounds like the pillow hasnt quite hit the spot for you ? Hope it gets better.
On a separate note haven't seen Sylvi on here at all this week.Do you know if all is ok or is she just having a quiet week?
Catch you soon.
Crusee
Xzx
Good point. Have missed her hope all is ok with herself and her husband.( hopefully she will respond soon).
I was so disappointed in Mr. Depp certainly not good for his self respect or public image . They can put all the publicity spin on it that they like but I think his behaviour is totally unacceptable.
Body pillow it is 50 /50 at the moment. But I promised myself I would try it for 3 nights.
I am beginning to feel like the princess and the pea.xx
No matter what spin the media put on it it's not going to make him look any better.I am very surprised at him not what I expected at all,and as you say disappointed too.Oh well we will have to find you another party plus one.Has Kai got anyone lined up yet or has she been too busy sorting the orchestra er I mean group?
I hope this pillow starts to have some effect soon it sounds too big to put in a cupboard out of the way.Give it one more night and if it's not working have you got a dog that may appreciate a new bed?
Just leaving house to visit my brother & family.It will take ages to get there.They only live a couple of miles away but a new bypass is being constructed around the town and there's traffic lights everywhere,none of which work in sequence and with bank hol traffic as well its a complete nightmare.Could be midnight before Iam back.
Catch you later.
Crusee
XX
Firstly enjoy your evening or siesta in the car depending on the traffic and the lights.
Kai has not mentioned a plus one. Have you read her last post it is more than the orchestra she is organising.!!
Yes another night then decision time. And I had already had the same thought process as you 're dog bed. The lab would love it the two cats tend to push him of his bed or least squat there regardless of it being in use.
Have a lovely evening. What are they doing carving up Wales to put in a bypass !!
Xx
Well it took over 40 mins to get to brothers house,normally a 10 min drive so a bit frustrating ! it was late when we got back so went straight to bed.Had a nice evening out though.
More social activity today as well,my stepdaughter has invited us over for bbq lunch.really warm and sunny here today and it means I won't have to cook today.Just as well as fingers quite stiff at the moment.
Saw Kai's last post this morning.!!!!.....Jeepers we are all going to end up behind bars before we get this party started.I hope we have enough cash stashed to raise bail.!
Anyway how did the last night with the pillow pan out? Will you be keeping it or will doggy and the pussy cats be getting a new bed? They've probably being eyeing it up already with the same idea.I think you're as bad as me with impulse " seems like a good idea" buys.I used to be able to get to the door first to meet the postman/courier and squirrel away my purchases before hubby saw them but it's damn near impossible these days so all my mistakes are out in the open.
The new bypass is a bit of a carve up at present.They have only just started it and it's expected to take approx two years,but I heard last night that a lot of the local contractors involved in the works have been signed up for five years ,so it's going to go in for some time ,but it has been desperately needed for years,and will make a big difference to the town.
Well I must rifle through my wardrobe and find something presentable to put on.Was going to have a pj day today but can't really go to a barbie in my pjs,and my left leg has been leaking like mad overnight so don't feel good about myself today.Just pray that I don't bump into James Martin or Adonis consultant today.
Have a good day Smithfield.
Catch you later.
Crusee
XX
Hi Crusee
Weepy legs not good ,but I think Adonis and James Martin would love you regardless. We do.
Bonus not having to think about what to eat two nights on the trot. Hope you enjoyed the food.
I do not do much cooking now which I miss.But I cannot stand for even short periods, I did wonder if a perching stool might help. ( impulse buy about to happen) My h
does most of it now, I offer suggestions and guide him through it, but we have to different styles I lean towards the haphazard whereas he follows the recipe to the letter. Can lead to some interesting interaction
Impulse buying I would like to think I have learnt my lesson but I am a realist. The coffee table, I think I said, is wrapped labelled and in the garage with a note on the door telling the world where it is. The day it was supposed to be collected they refused to take it, as I had popped to some appointment or other. I now have to arrange collection myself, I phoned on and off all day Friday and again Sat. The phone just kept ringing. So it languishes in the garage, a constant reminder of my fool hardy ways.
Pillow is staying, it is huge and I can fully understand your niece loving hers. But I think to get the most out of them you need to be supple and flexible it goes without saying I am not.
But I have found with a bit of practise and positioning it stops me from lying on my back which keeps the pressure area on my bottom off the mattress. Mind you getting out of bed to go to the loo is like wresting with a octopus. And with the body pillow and the pillows to elevate my feet just getting into bed is a mission
And finally, following Kai's post I think we may have moved up to higher surveillance than admin. Posts being read, phones tapped and our post intercepted. So be careful what you say.
Hope you had fun at the weekend, and managed to keep your leg elevated at the same time
Take Care
Smithfield.xc
Hi Smiffy,
Got back from bbq and sat in garden for half hour.Too nice to sit in the house this evening..Its been a lovely day here.Unusual to be able to say bank holidays and sunshine in same sentence.Stepdaughter is a good cook so food was lovely.Good crowd step d and partner,grandson and fiancé and her little brother aged 10 and granddaughter aged 12 and of course me and hubby.It was lovely. Like you I do not do a huge amount of cooking now,I loved cooking and I am a good cook even if I say it myself.I cannot stand in the kitchen for long either but I have bought myself a bar stool with a high seat and it revolves.Adjustable for height and so I can manage to do quite a bit with this.
My hubby fills the kettle for me if I need water,and peels any awkward veggies.He also puts in and takes out any pans from the oven for me .I gather all my ingredients from the cupboards before I start and he opens any tins/ packets that are fiddly so it works quite well.I do the other bits.
He will cook on a few days during the week.Nothing fancy it could be cod fillets and oven chips or gammon and new potatoes but I am still alive. And we have also had some interesting interaction,just how flamboyant can fish fingers get? But the bar stool was the best investment I made .Think I got it in Argos and it has a sort of low back rest to stop me falling off the end.No castors on the bottom I think these could be dangerous..Dont know the extent of your disabilities so not really able to say if it would suit you but if you could manage to sit on it you should be ok.i will look in Argos cat later and get ref no see what you think. Cost approx £50.
I position mine between the cooker and the fridge and can reach most stuff without too much difficulty.
So the pillow is staying,bet the pets are disappointed, but if it prevents you from lying on the pressure spot then it will obviously help you but it sounds like a bit of a palaver getting in and out of bed.
Last point noted will give it some consideration..Hope you have a restful night catch up soon.
Crusee
XX
That sounds more interesting .Do you take commissions for funerals, weddings and the rest of life's dramas?
Xx
What is a subwoofer ? I feel I am missing some of life's pleasures.xx
Life should be celebrated.
I am so tired tonight one of those air out of the balloon tirednesses
I think my brain has stopped functioning cannot even be bothered to pick up a book. So bed it is.
I know I said no status quo but this has gone totally the other way.Just as well I can't get up for a good old boogie these days,although I am partial of the Brandenburg concertos.
Have you dig out a party frock yet?
Crusee
XX
Hi Crusee Have not heard from you for a while just wondering how you are.
Been busy these week not sure with what but it has felt busy.
Indoor Barbie at my son's yesterday because the weather was so appalling but his sister's were there so lovely to see everyone.
Wound clinic today not much to report there except it was dressed . But she did say I could have a shower if I had someone available to redress it. Do not like conflicting information it makes me edgy so not sure whether to risk it or not. But I am desperate. We tried me kneeling over the bath on the shower step with two think pillows on top. Not sure how I got down or up again.! That has been ruled out as to painful. Next time my husband got in the shower I stood outside with just my head leaning in, that was easier, but we had to keep stopping every few seconds so I could sit down. Hairdressers tomorrow thank goodness.
Parcel has finally gone. Yesterday.
Hope you are well take care
Spiffy.xx
Smiffy,
Apologies for late response.This has been an awful week or so for me.
Glad you enjoyed the bbq.We have had some really nice weather here just lately- totally out of character for Mid Wales but hey ho I can't complain.Even had sun on bank holiday.Its not very often you can use those two words in the same sentence!
I was going to ask you how the bum dressing went- is the wound starting to heal yet? This showering lark sounds more like an olympic event,just be careful you don't do yourself a mischief but I know what it's like especially the having to sit down bit.
I looked in the Argos catalogue for the stool I use in the kitchen and found it-
Ref. 600/0372. Black
600/1522 Red
239/6011 White
They were £49.99.like I said one of my better purchases.I have not had time to go shopping online lately so haven't made any more unwise impulse buys.
Anyway what's been happening?On 1 st June went to Cardiff to see top dermatologist.Spent nearly 4 hours at the hospital and they were very good but they have recommended a course of treatment that involves me having to go to hospital every day including weekends.I have to soak my legs in potassium permanganate for 20 mins and then they will need to be dressed every day.This is to happen every day for 2 weeks and then for the following 6 weeks it will be every other day.This is going to kill me.I had visions of getting rid of Norah Battys by the end of the month but it doesn't look like thats happening.They have put extra padding on there as well and my legs are soooooo hot.Just what you want for summer.We are supposed to be on holiday for first two weeks in July but I can't go away with these legs and also I need to follow the treatment regime.
Doc has said we can arrange this with a local hospital where we are going but I am not going on holiday and messing around with hospitals every other day,and I am not taking my Norah Battys with me either !
Lymphodema nurse has been this morning and she is getting all the stuff I need on prescription for me so I can start this when they turn up.She will also arrange that district nurses can do some of the dressings.Now they will all start to argue about who's budget they come out of.Last Tuesday I went to the surgery for my INR test ( blood clotting reading).I walked from waiting room to nurses room approx 15 yards and was absolutely breathless.She was concerned and made an appt for me to see doc on Friday.He has now given me an inhaler so another bit of equipment to deal with .On the plus side the breathlessness has improved.
Last Tuesday my husband was laying some new tiles in a part of the kitchen,We had a new cooker and the tiles were fitted around the feet of the old one so he took some of the old tiles away and wanted to put new ones down.He disconnected the cooker from the mains and moved it out and there was a huge puddle of water under the cooker.
To make sure he knew where the water was coming from he emptied and moved some of the fitted units in the kitchen along with the worktop and laid towels down to dry it out.Overnight we had used the toilet,wash hand basin and shower upstairs and when we got up on Wednesday morning it was soaking again.Hadnt got time to deal with it then as we were going to Cardiff so more towels,on the floor.Got back 10pm on Wednesday ( visited family in Cardiff whilst we were there) and it was dry again.So stopped using upstairs water but aren't sure if it affected downstairs as well,but we were sure the water wasn t leaking from anywhere inside the house.On Thursday morning rang the Water Board to check if it was their responsibility or ours.Eventually decided it was ours.Rang local plumber who explained they had a number of emergency call outs to deal with they would be there as soon as they could.In the meantime we had 12 soaking wet towels but didn't dare use the washing machine so had to take everything to my brothers house.Had showers while we were there.Plumber turned up on Friday and explained that it was outside not inside and we would have to get a groundsman to dig it out.Cant describe the technical aspects but it's something to do with the u bend and the draining system from upstairs flow.
Grounds man came on Saturday to assess the job.Its going to be a big job and cost a fortune so later I have to get in touch with insurance co to check we are covered for such events.The reason it's a big job is that the house is built into a bank.the kitchen is on the bottom floor of 3 storey house and is below ground level from one side,it just happens to be the side where the fault is so they need to dig down through a foot of concrete to reach the problem.Our electric has also been tripping out,don't know if it's related to the water problem or if it's something completely unrelated.
So here we are,husband rewired cooker yesterday so we could cook.We have eaten out with family or got takeaways since last week.Had showers at brothers or step daughters and bottom floor of house looks like a bomb site everything is everywhere and it's driving me nuts !!!!
And on top off all this the air con has stopped working in the car.Ok I know that's a minor irritance compared to the rest of the stuff that's happening but it's just one more thing.At least the car is still under warranty so that won't cost anything.Ggggrrrhhhhhh!!!!!!!
Hope your having a better week than me.I feel like everything is out of my control and I hate it.
Have put wine on shopping list for my husband when he goes shopping later!
Speak soon.
Crusee
XX
Crusee, My bum fades into insignificance compared to your legs.
The house sounds like a disaster zone it must be driving you completely crazy .
I suppose because of the difficulty I have walking and lifting I have to have things tidy and in reasonable order. I guess it is probably much the same for you. And of course you cannot do to much so your husband has to do it.And the kitchen is the worst place!! I really hope your insurance covers this or as you say it will cost a fortune..I am speechless a nightmare.
Having showers in someone else's house is fine but you don't just have a shower you have to deal with the legs and putting covers on them. And then you get the good news of daily hospital treatments . Will this treatment mean your legs will no longer need dressing and will it hopefully get rid of the the leg ulcers? If so worth it and your humour will help you deal with it.
Bum went to wound clinic Friday they have graded it as a 3 no sign of improving. But it did have its photo taken . She mentioned equipment so I said it had still not arrived but I was allowing for the bank holiday . She said chase it up.
Which I did, paperwork had been lost. What is it with me and paperwork? Anyway we ended up collecting it today mattress topper really is beginning to make me look like the princess and the pea. But if it helps so be it. Bit worried about the heat though as they have this hospital bed plastic covering.
Plus I have a cushion to sit on.
Well Crusee, I really hope your house is sorted soon. You are more than welcome here for a shower, bed and meal anytime.
Try to take care,
Love Smiffy.xx
Morning from the war zone Smiffy.
Well groundsman has turned up this morning and started to dig out the concrete at the front of the house.Dust everywhere just like an Icelandic volcano.The whole house is shaking from the pneumatic drill and I can't hear myself think!!
He has however found the problem and says he can sort it- that gives me a comforting feeling.I wonder if he will come back and help me replace all the stuff out of my kitchen units.? If I was a sensible person I would use this opportunity for a declutter but as I am a natural hoarder that may not happen!
I really can't stand this mess,everything everywhere and nothing I can do about it!
I was supposed to have an apt at the surgery this morning for my INR but really haven't got the strength to get going this morning so have rearranged for later in the week.
Never thought I would appreciate my own shower so much . I have been using my brothers .They had a disabled son and built a suite downstairs for him.Its a nice wet room so easy access for me but only trouble is I like a shower that has a strong flow (like being sandblasted ) and in this one you struggle to get wet.But I mustn't be ungrateful it's better than not being able to have one at all.
As for the legs- this is a real blow for me! Hospital everyday to have the chemical soak and also redressed everyday- including weekends- aaaarrgggghhh!!! This is going to be a real bind.The plus point is if this works then I can kiss goodbye to Norah Battys and I will just have to wear compression stockings so it will be well worth it.May just cancel our July holiday,stick with the aggro and do something nice later in the year.Hope it works.Have a scan at Cardiff in July and a follow up appt. so a couple more trips down there to look forward to.
I hope there is an improvement on your sore bum.The mattress topper sounds like it's helping,and hope the plastic cover doesn't create a problem but yes you're right the heat isn't helping is it?Hubby and I have slept in separate beds the last two nights as its been so warm and with all those bandages on my legs it is worse.This must be the first year I am praying for a cold summer.Typical, isn't it?
Are you still using your new bed pillow you purchased or has that been consigned to the doggie dept?
You seem to be fated with paperwork or lack of it.Nothing is ever straightforward these days is it? And you end up having to chase things up yourself,which shouldnt be necessary if they were done properly in the first place.
Thanks for the offer of the shower,etc - may just take you up on that.Decamp in Kent for a day or two and when I get back the leak will be fixed and the kitchen fairy will have been and put it all straight again-----aaaahhhh sweet dreams!!
Catch up with you soon Smiffy,hopefully nerves will have calmed down by then and house will have stopped shaking!
The earth has certainly moved for me this morning.
Take care.
Crusee
XXX
Not sure what you are complaining about Crusee, if the earth moved for you. It moved.
On a serious note, I hope the nice comforting man can actually fix it and quickly and at a lowish cost to your sanity.
Do not worry about your cupboards put it all back in clutter or not. I love clutter my daughter in law is a minamist, so looks at me in horror when I buy another piece of crockery and my son has threaten to put me into residential care if I buy another book. They do not understand life's simple pleasures.
I know this treatment plan is so invasive and will take over your life for a while but just think of the freedom with no Nora Battey legs it will be wonderful.
If you want it cooler come to Kent our weather is not good at the moment.We went out this morning in sunshine drove back in lashing rain It was the Dickensian Festival at the weekend in Rochester and while it did not rain it was not hot. It is normally packed with tourists but seemed quite this year.
Cardiff is a lovely city, we were there a couple of years ago they have certainly done a lot of renovation in the town centre and the harbour.
My grandfather came from Cardiff I was going some family research in the area but sadly a lot of old records were destroyed in the war.
Shower tried it this morning as the dressing came off on it's own. It was a bit of a nightmare I tried to keep my back as dry as possible by facing the shower, I got shampoo in my eyes could not hold the grab rail with my right hand as it has very little grip found it difficult to wash my hair with the left hand. So all on all a little cleaner but it was scary as I thought my knees were going to give way and I could not hold on tightly. The joys of RA.
Hope the nice man fixes it soon and the kitchen fairies arrive overnight.
Take Care,
Spiffy.
Xc
Well Smiffy,Spiffy or Squiffy it's been a long day.
Shouldn't complain should I - just being selfish me ,me me,me,me.
The grounds man has done a great job bless him.Coming back tomorrow to concrete it all in place.Thought I would contact insurance co as I thought we were covered for such events.Turns out we may be! Threw a wobbly and said we were either covered or not so which was it? They would send an assessor around in a couple of days to look at it.Told them it was going to be concreted over in the morning so they would have to hurry up.Told to take photos and they may be able to cover part of it.Asked them why we were paying insurance premiums and things went downhill from there to a slanging match.
Really angry about the whole thing!!!
Glad to hear you are a book collector and crockery collector too- these are my downfall.Have hundreds of books and crockery coming out of my earholes and I love every piece I Have collected over the years.Cupboards are bulging.Husband wants to know when we are expecting 80 plus people for dinner all at the same time.Well there's nothing like being prepared for every eventuality.!
The weather is great here been in the 20s today and forecast for tomorrow too.Ths must be the first year I am praying for a cool summer.(Norah Batty rules ok)
My hubby was born and brought up in Cardiff,even he doesn't recognise parts of it now especially round the Bay Area.He has been researching his family tree and is doing a genealogy degree course,He has traced back to 16 th century- found some real dodgy characters I can tell you.
These showers are proving a bit of an effort aren't they? Do you have a shower seat? I couldn't do without mine as I can't stand either.I suppose your issue is the bum dressing at the moment.
Well the nice man has done his bit so will be able to use shower tomorrow,Will leave biscuits and milk out for kitchen fairies and if they are that way inclined may leave them a bottle of wine and a corkscrew.But will they finish the kitchen after that?
Take care.
Catch up soon.
Crusee
XX
A Rose by another name that's me.
Well, how are you.? I must admit when you said the nice man had concreted over,
and you could have a shower the next day I was impressed thinking when it first started it was going to be a really long job. But what about the not so nice man at the insurance company who takes your money willing but is less willing to pay out against a claim. Did you have any joy.
I can see nothing wrong with a dinner service for 80 people.Most households must have one. I like charity shops for odd bits of crockery and of course books.And they are good to browse in.
A degree in Genology that sounds really interesting. Is your husband doing it as a distance learner? ( If so could you send me details please, it is such a fascinating subject.. I found a Gt.Grandmother, deported to Australia for bootlegging. I would just love to go back in time and spend some time talking to my ancestors so much history.
Social butterfly today, chiropodist this morning ( all good) wound clinic this sfternoon ( fingers crossed).
Watched the debate on the EU referendum last night, more confused than ever it is such an important decision.!!
Hope you are well and maintaining some sanity.
S ( that is easier)
Xx
Afternoon S.
I'm ok thanks.Hope you are too.Well I say ok I haven't been to bed for the last 3 nights - it would just be a waste of time.It has been far too hot weather wise and with my Norah Battys as well its insufferable.My husband has even been going in the spare room to sleep to give me room to spread out in bed but even that is no good so I have been sat down in the lounge and reading and on my I-pad etc -all the things you do in the middle of the night to pass the time.I don't get proper sleep and just cat nap and of course it goes on into the next day- I am sure you well know what I am talking about.
Anyway my nice man,as it turned out he was even nicer than I gave him credit for.When he came round initially to assess the work he said that as he couldn't see the damage he had to wait until he got in there to see what was wrong.He had given us the worst case scenario so there would be no surprises when the work was done..As it was he had chosen the right end to start the digging from and came across the problem relatively quickly.He was doing it all the first day another of his workmen came along in the afternoon and so a lot of the work was complete, on the first day .They came back and concreted the second day and by the end of the 3 rd day we were back in business with water,showers etc so a good job done.The best bit was he said if we wanted to give him a cheque there and then he would knock some off the bill and not charge the Vat so we saved over £150 on the cost of the work a very nice man.
Complete difference from Daniel at the insurance company.That is still going on and they still haven't confirmed we are covered for this but I have been through our policy with a fine toothed comb and we are - they are just trying to wriggle out of paying.But come Monday I am ready to do battle so god help him!
Now the degree- this is a bit long winded but what my husband is doing is a program known as SELL.( School of education and lifelong learning).The course he does is run by ABerystwyth University. They have courses run by Uni lecturer in our local town.These are Jan - Feb,APril - June,and sept- October.There are 4 Saturday courses in each session and each one is run for 6 hours.They do work in the session,course work at home and at the end of each course they do an assignment based on what they have covered..The assignment goes to the UnIversity for marking and each successfully completed assignment results in credits which add up to qualification at the end.He has been doing this for a few years and has completed the equivalent of the first year of a degree and is now on another year to complete the degree.
If you look at qca.org.uk/open quals
This will explain the different levels and what they equate to .He is currently on level 4 ,Level 6 gives you the full degree,Level 7 is MA equivalent and level 8 is doctorate.
I am sure a university close to you may run this type of course and possible as distance learning although he finds it very useful going along to the sessions to bounce ideas off others etc.Dont know you're location and don't know if you would find it difficult to attend any sessions but distance learning is better as you can do it at your own speed.He has already received a certificate of higher education.
So what he is doing is lifelong learning course in genealogy,history and archaeology.I suppose it would depend on the university running it and how much interest is shown to be able to run the course as they have to have minimum numbers.Sorry said it was a bit long winded but I hope you can find something that will suit you.
Hope all went well at the wound clinic and that the sore will heal soon.I was a bit of a social butterfly on Friday too INR clinic in morning hospital in afternoon to have legs redressed.know I joke about my Norah Battys but if I don't laugh I will cry I am fast losing my sense of humour with these things and it will go on for another 6-8 weeks at least-just what you want for the summer!!,,and were only 3 days into it --aaaarrgghhh!,!,
The kitchen fairies were not much help at all - never turned up.I am sat here now in my kitchen ,dog tired,grumpy as hell and surrounded by dare I say it clutter.(of my own manufacture) If there was ever a case for decluttering I am right in the midst of it,all my impulse buys.A lesson learned.
Sanity has gone completely,not sure when it will return if ever.
I hope to speak to you soon S if no response my husband has probably had me sectioned or I have been dragged off by men in white coats.!!
Have a good weekend.
Crusee
XX
Hi Crusee, been trying to grab five minutes to catch up with you.
Firstly some good news just had a phone call to say delivery of Cimzia is coming tomorrow and the nurse will be contacting me Thursday or Friday to make an appointment.
It is a perverse world when we get excited about sticking needles into ourselves.
Sleep!! Have you killed anyone yet? Or at least taken it out on the non helpful insurance guy.? I lack sleep but not to that extent it sounds like torture. I hope it has improved but the nights have been really muggy. Not helpful.
It was our village fete husband did the coconut shy, it is surprising how popular that is. My granddaughter 8, came to allegedly help pick up the balls. Anyway she ended up staying . Took one look at my bed with its double mattress and begged to sleep with me. She pointed out she would not be able to kick me as the body pillow would stop her.She has been banned for GBH in the past. Apart from the odd arm cutting off my air supply and her falling out once, it was an ok night.
Thank you for the information on ancestory degree courses. It is something that really interests me and I need to keep the brain working especially as I no longer work.
Really hope you have had some sleep and your house and sanity is returned to normal levels.
Worse case scenario if your husband has you sectioned they might medicate you and knock you out so you get some sleep. Might be worth considering.
Take Care
S
Xx
Cruiser. Update on Cimzia phoned the health care team who are supplying the biologic to see if they had received the paperwork, a very helpful lady searched under every combination possible and found nothing.
Phoned my hospital back spoke to the pharmacist, got cut off, phoned again spoke to the same pharmacist who said they had signed it off the day they received it and sent it to the procurement dept. gave me their number I phoned them still sitting there waiting for signature.
I cried.xx
Ggggrrrrrrhhh!!
Doesn't it just make you so angry.?
Youre sat there waiting for something to help with your condition ,they're sat deciding what colour pen to use.
Not surprised you cried it's enough to push anyone over the edge.
People who do not have these condition s just don't understand do they?
Hope this can get sorted for you soon Smiffy, it's not a good place to be.
Fingers crossed for you.
Crusee
XX
Reply on Folic Acid...
Curious
Off topic diary of my RA and benepali
For anyone who started on hydroxychoroquine only??
dla
