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  • FIRST POST
    • pollyanna 26
    • By pollyanna 26 11th Sep 16, 9:56 PM
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    pollyanna 26
    OS ways and Poor Health
    • #1
    • 11th Sep 16, 9:56 PM
    OS ways and Poor Health 11th Sep 16 at 9:56 PM
    Earlier today I joined a very good new thread on getting back to old style ways . I managed to take it in another direction by mentioning how ill health can impact on doing everything the old style way . As this was off topic to the original post . I will be posting on the original topic but without going off in another direction
    This seems to happen a lot of the time across the threads as many old stylers do have to cope with this problem .
    Many moons ago PREPARE AT HOME began a lengthy thread on being os with health problems and there have been a couple of other threads over the years .
    I am wondering if the time is right for another thread on the subject with the proviso it is not offering advice on medical subjects as that is for the professionals . We all do many things day to day to minimise fatigue and pain and though they are little things we have developed them to cope and others may not be aware of how helpful the little changes can be .
    I would be interested to see if others would like to join such a thread . I am not very techie as you will gather from my rambling post and have never started a thread before - I hope this posts !
    polly
Page 73
    • pollyanna 26
    • By pollyanna 26 22nd Nov 17, 7:36 PM
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    pollyanna 26
    Apologies for being mia .

    Still haven't recovered from the evil virus while DD has managed to develop an assortment of other things requiring changing meds with the expected problems while her body hopefully adjusts .

    I've meant to come back here but have barely been online .

    I was sorting out the paperwork for DDs long awaited appointment with the main rheumo consultant and remembered Mr LW had his appt either yesterday or will do so tomorrow . So which ever it is I'm sending the positive vibes to you both and hoping for a speedy and positive outcome .

    I've two long days ahead tomorrow and Friday so am I'm sitting here in usual wet hair mode . I may get back on before the weekend but laptop was down with the family techie last Friday following the sudden Mozilla update which created lots of problems . Seemed to be sorted but more things need doing so off we go again tomorrow .

    So worried I hope you are ok . Do you have a date for surgery ? We'll be thinking of you .

    I can't catch up at the moment with all the posts but Tink if you haven't finished getting all the bits for the children it's worth having a look at The Works . You may not have a branch but they also have an online site. I was in there last week and they had your choice from a good range of childrens books 10 for £10 . You can of course buy less individually . Lots of craft stuff too .

    I think I've exhausted the energy levels now so will be back when i can . i hope you're all ok with this grey wet weather . Well here in the NW . Hopefully others are luckier and have seen some sun .

    Good to see you back LL . Take care all .

    polly x
    • LameWolf
    • By LameWolf 23rd Nov 17, 11:29 AM
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    LameWolf
    I was sorting out the paperwork for DDs long awaited appointment with the main rheumo consultant and remembered Mr LW had his appt either yesterday or will do so tomorrow . So which ever it is I'm sending the positive vibes to you both and hoping for a speedy and positive outcome .

    I've two long days ahead tomorrow and Friday so am I'm sitting here in usual wet hair mode . I may get back on before the weekend but laptop was down with the family techie last Friday following the sudden Mozilla update which created lots of problems . Seemed to be sorted but more things need doing so off we go again tomorrow .
    Originally posted by pollyanna 26
    Thank you Polly; it's very kind of you to think of us amidst all your own problems - I hope DD gets on well with the rheumy.

    Mr LW's appt is this afternoon; he's been told it'll be an hour long consultation, and parking is restricted to 2 hours. So as we don't know what their timekeeping is like, the plan is for me to go along with him and bring the car back (it's only 3.6 miles away) then collect him when he's done.

    All very fine, but I'm still terrified to drive after us being rear-ended badly in 2015.

    We did a recce the other day and I've taken detailed notes of the route - right down to the names of the roundabouts; if I don't do this, it's a guarantee I will get royally lost driving on my own.

    We have a poorly pc, and it's currently in "pc hospital", probably needing a new cooling system; so having to argue over share the laptop; and I too have been battling with Mozilla's latest offering. I don't care for it much, tbh. Maybe it'll grow on me.

    Ah well, at least Snoozy Suzie Spaniel is here for a 2-night stay; so she's brightening up the bungalow. She's currently on her beanbag, snoring her little head off!

    I hope everyone's staying safe and warm; we had a beastly storm here last night, I was frightened it was going to cause damage, but we've got away with it, thankfully. Field is flooded though, so Suzie had to have a different route for her morning walk.
    LameWolf
    If your dog thinks you're the best, don't seek a second opinion.
    • Primrose
    • By Primrose 23rd Nov 17, 12:00 PM
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    Primrose
    I was thinking about those comments about having to drive to the hospital. I don't think the hospital building planners have any idea how stressful it is worrying about being able to park when you have a hospital appointment on top of the anxieties of the consultation itself. They never seem to consider that this is all part of the NHS consultation process and experience and whilst they allege they throw money at staffing, etc. they never throw any money at resolving parking. To me, this is just another part of the NHS experience. Add in a sick or disabled patient and it becomes even more for a nightmare for patients and those who transport them.


    Parking facilities at our local hospital are diabolical. We've found ourselves arriving an hour early because it sometimes takes that long to find a parking space, and then forking out an eye watering parking fee. I do wish the planners would provide more time thinking about this and coming up with some practical solutions. It's all very well closing hospitals saying they are saving money but one of the many downsides is that you then have double or treble the number of outpatients and other visitors all fighting for the same amount of parking spaces.


    If you don't have high blood pressure before your visit, you certainly do by the time you've tried to resolve and sort out your parking issues.
    • Wednesday2000
    • By Wednesday2000 24th Nov 17, 9:10 AM
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    Wednesday2000
    I usually get a taxi rather than a bus when I have to go to a hospital appointment as I find it less stressful. I always get there super early just to make sure I find the department!

    I have had pains and stiffness in my side (fibro thing?) for the past few days and I had some fresh ginger tea this morning and it seems to have helped with the pain. I was having ginger tea for a while and then forgot to buy it so I was quite glad to see that it worked when I started it again today.

    I can't remember if I said this on here, but my husband has kept his job.
    "It doesn't cost any more to dream big."
    • LameWolf
    • By LameWolf 24th Nov 17, 1:44 PM
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    LameWolf
    Great news for your DH, Wednesday.

    Mr LW had his visit to the consultant; I managed the drive home and back to the medical centre to collect him; but I got him to drive us back home, as the schools were just turfing out, and the roads were chock-a-block with parents on the school run - far too much traffic for me, and some pretty awful driving observed, too.

    Anyways, the consultant has ordered up three tests, which will presumably be done at the hospital (cue another session of going with him and bringing the car home; I'm b******d if I'll let him pay extortionate hospital parking fees) and when they've been done, he has to ring the consultant's secretary to book another appointment. He said one is a more in-depth breathing test than was done at the GP surgery, one is a scan on his heart, and bless him he can't remember what the third one is.

    The consultant was impressed with my typed-out timeline document; he said it was very useful; so that was good to know.
    LameWolf
    If your dog thinks you're the best, don't seek a second opinion.
    • pollyanna 26
    • By pollyanna 26 28th Nov 17, 12:41 PM
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    pollyanna 26
    Back briefly . Glad you managed the drive to the hospital LW . Any news of appts yet ? I think more people are now becoming aware of the power of a timeline and bullet point prints to take to appts . Easier all round , I pass the message on when I can .
    Any doggy guests at the moment?

    Good news about your husbands job Wednesday that must be a relief . Don't forget you can make your own ginger tea from either grated or sliced ginger . I freeze the ginger ready peeled and minced in ice cubes trays and you just pop one into a mug with boiling water to infuse . I've got a little teapot for herbal teas with a inner strainer but a tea strainer is handy with a mug .

    I think it was maddie who was having shoulder problems , are they improved now ?

    You're quiet Tink hope you're just busy rather than ill .

    How's the leg now Cranky ?

    I can't name everyone but hope all are ok , coping with the baltic weather and staying warm .

    Still having issues with the new Mozilla better in some ways not so in others especially storing passwords . First Gmail made me change it after the update but all attempts so far to get them to store it have failed and it means I have to enter the very random new one every time I log in .

    Tomorrow is the appt with the evil consultant and we'll be glad when it's done . If it isn't a complete waste of time and a very long journey we'll be amazed . Still we can hope and our dear taxi driver who is not back at the day job is taking us once more in his own car "Not all superheroes wear capes "

    I have a few spoons to share as I've been trying to pace myself - aka the house is a mess - so shiny big spoons to any in need and positive vibes all round .

    Stay warm and hoping today is a decent one .

    polly x
    • LameWolf
    • By LameWolf 28th Nov 17, 12:54 PM
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    LameWolf
    Back briefly . Glad you managed the drive to the hospital LW . Any news of appts yet ? I think more people are now becoming aware of the power of a timeline and bullet point prints to take to appts . Easier all round , I pass the message on when I can .
    Any doggy guests at the moment?
    Originally posted by pollyanna 26
    Good to "see" you Polly - I do hope the appointment is useful; nothing worse than time and energy wasted because they're not helpful when you get there!

    We got a letter for Mr LW's first test of the three this morning - it's a CT scan, to be done this coming Sunday. So we shall do a recce when we go into town later in the week and I'll make notes on the route to & from the horse-piddle (if I don't do this I shall get royally lost, as I have problems with Left and Right iyswim.)

    We currently have an elderly Shiba Inu X Corgi named Daisy staying; she arrived yesterday. She's an old friend, she used to be with the company I worked with til they closed the franchise; this is her fifth stay with us in total.

    Sunshine in Concrete Cow Country today; Mr LW is going in the garden to rake up some leaves, and I think Daisy may go outside with him. She loves being outdoors, and the garden's all enclosed, so I see no reason why she shouldn't.

    Hoping everyone is having the best day they can today.
    LameWolf
    If your dog thinks you're the best, don't seek a second opinion.
    • pollyanna 26
    • By pollyanna 26 28th Nov 17, 1:28 PM
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    pollyanna 26
    Thanks LW to be honest I'm hoping she may not be in clinic for some reason and we'll see one of her team who seem much more on the ball . It was one of the team who called her into the room as they worked out dd had Psoriatic arthritis within minutes and needed confirmation from the consultant . As she'd missed the signs herself I think she holds some sort of weird grudge . We're always polite but will question certain things that aren't right , add in a timeline and diary and she probably lies in a darkened room before we arrive
    Good to hear the first appt has arrived , long times until things happen are pretty hard and stressful so the sooner the better in my opinion .
    I now need to google Shiba Inu as that's a new one on me .
    How are you keeping yourself ? I will be sending the vibes and lavender for the journey and appt .
    Very cold here but a glimpse of sun and finally now no frost or ice . Hope the sun stays with you and Daisy manages to warm her bones outside .

    polly xx
    • LameWolf
    • By LameWolf 28th Nov 17, 1:51 PM
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    LameWolf
    I now need to google Shiba Inu as that's a new one on me .
    Originally posted by pollyanna 26
    Photo copied'n'pasted from Wikipedia.
    It's apparently Japanese for "small dog". Add in the Corgi side as well, and you have something that looks like a small, blonde fox.
    LameWolf
    If your dog thinks you're the best, don't seek a second opinion.
    • Wednesday2000
    • By Wednesday2000 29th Nov 17, 10:04 AM
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    Wednesday2000
    ^ The dog sounds really cute LameWolf!

    I hope the consultant trip goes okay Polly.

    I've started taking melatonin at bedtime, the first night I had weird dreams which I remember I had before when I used to take it a few years ago.

    Last night I had a really good sleep and could barely peel myself out of bed this morning! It felt so comfortable. I've read melatonin has a lot of other health benefits too so I'm going to carry on with it.

    It's very cold again today. I might put up my Christmas tree this week as I love having the lights on all day.
    "It doesn't cost any more to dream big."
    • candygirl
    • By candygirl 29th Nov 17, 1:18 PM
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    candygirl
    Good luck today POLLY 😋
    LW my neighbour has a Shiba inu that I call Samantha
    WEDNESDAY the melatonin sounds fab 😁
    I've been on the CBD and the thyroxine fir a month now, and feel almost like a normal person. My pain levels are manageable, n my energy levels have shot up ., in that I actually have some
    "You can't stop the waves, but you can learn to surf"

    (Kabat-Zinn 2004)
    • maddiemay
    • By maddiemay 29th Nov 17, 6:11 PM
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    maddiemay
    POLLY I hope that things went well today.
    CANDYGIRL. Great news about the increased energy.
    WEDNESDAY. I have not tried Melatonin, but 5_HTP which is a precursor gave me interesting dreams, but thankfully not scary ones!
    LW. I knew a lady who had Siba Inu s they were cute, hers were rather self contained and not ones for receiving fuss from non family. Pleased you have some dates for Mr LW now.

    Most of my troubles from the crash have gone, also the horrid cold. I have had a bit more energy and am managing to do some clearing of surplus possession and craft materials, I have set myself a target of getting the spare room (aka room of doom) cleared for the start of the caravaning season, OH is on board and helping too.

    Still not got laptop back, they are trying to retrieve as much as possible from old hard drive for me, don't mention backing up regularly please, it has been one of the trillions of things not done or done properly since I have been ill

    Take care all.
    • MisterPym
    • By MisterPym 29th Nov 17, 6:45 PM
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    MisterPym
    ^ The dog sounds really cute LameWolf!

    I hope the consultant trip goes okay Polly.

    I've started taking melatonin at bedtime, the first night I had weird dreams which I remember I had before when I used to take it a few years ago.

    Last night I had a really good sleep and could barely peel myself out of bed this morning! It felt so comfortable. I've read melatonin has a lot of other health benefits too so I'm going to carry on with it.

    It's very cold again today. I might put up my Christmas tree this week as I love having the lights on all day.
    Originally posted by Wednesday2000
    Hi,

    Can I ask where you get your melatonin?

    thanks
    • Wednesday2000
    • By Wednesday2000 29th Nov 17, 8:46 PM
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    Wednesday2000
    Hi,

    Can I ask where you get your melatonin?

    thanks
    Originally posted by MisterPym
    Biovea UK.
    "It doesn't cost any more to dream big."
    • pollyanna 26
    • By pollyanna 26 29th Nov 17, 9:40 PM
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    pollyanna 26
    Thank you all for your kind words . Sadly today went very badly and lasted for hours . Too tired to think but will catch up tomorrow .
    Lovely picture LW cheered us both up .
    Take care and stay warm everyone .

    Polly x
    • candygirl
    • By candygirl 29th Nov 17, 9:43 PM
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    candygirl
    Thank you all for your kind words . Sadly today went very badly and lasted for hours . Too tired to think but will catch up tomorrow .
    Lovely picture LW cheered us both up .
    Take care and stay warm everyone .

    Polly x
    Originally posted by pollyanna 26
    Oh no Polly.I'm so sorry to see this 😣😣
    "You can't stop the waves, but you can learn to surf"

    (Kabat-Zinn 2004)
    • pollyanna 26
    • By pollyanna 26 2nd Dec 17, 6:20 PM
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    pollyanna 26
    I've spent the days since DDs visit to the consultant working through my anger . I wasn't fit company for man nor beast as my mum used to say . Have finally started formulating where we go from here .
    Brief events at the hospital . Nurse did usual checks . The doctor doing the genetic tracking to go to the research in Manchester asked dd if she would be willing to pop in at the end of her consultation to add to her records to be forwarded .
    Called for the main reason for being there to be greeted by a young doctor we'd never met . She was lovely but could only look at brief info on diagnoses and meds on the screen and ask a few questions .
    DD wanted to clarify the situation from last year which wasn't dealt with or acknowledged by the dept and ended up with two lots of Barbotage after oral and injected steroids couldn't help all sorted by our GP .
    She also wanted to discuss the pain relieving meds mentioned about 4 years ago by the Consultant which can be prescribed alongside the MTX . DD has never been happy with the long term morphine and there are other drugs to control the pain our dr can't prescribe .
    None of that was within the young Drs remit .
    It just went on and on . DD was stressed , in pain and exhausted and burst into tears . Lo and behold the Dr went to fetch the Consultant who should have been present .
    Downhill from there . No she can't prescribe for pain because dd shouldn't have pain with PsA ( contrary to all symptoms of the disease ) Long lecture on Calcification for Dummies . We found all that information over a year ago when Rheumo weren't responding .
    The whole tone was try harder , exercise hard and push yourself on . Throw in lecture designed for drug addicts and dd left the room in tears . I'd followed the whole thing all the way through and it was nasty , judgemental and damaging for someone trying to cling to a few shreds of self belief or validation ,
    I was held back by a barrage of questions after dd staggered out . Her walking stick and warm coat were still with me . We were many miles from home and our friend was nearby but needed a call to pick us up .
    I wanted to reach her . Consultant said " she'll just be sitting in the coffee shop waiting for you " Not in your widest dreams ! She'll be heading for the way out . Oh do fetch her back to talk to me .
    Young Dr and a nurse ran through the hospital with me . I told them to go back when we got to the exit .
    Tried her mobile with no reply and after a search found her tucked away near the main gates and friend turned up quickly to take us home
    A new appt sent today for next June and a seperate envelope from the research team for bloods with a nice handwritten post it note .
    6 months to sort this and undo the damage .
    The clinical lead at the pain clinic and our doctor are first part of the plan .
    Rebuilding dd will be the main focus .

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

    polly xx
    • Prinzessilein
    • By Prinzessilein 2nd Dec 17, 6:53 PM
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    Prinzessilein
    Polly - gentle, supportive hugs for you and your dd.

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

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

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

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

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

    Still - I managed to get to the posh afternoon tea last week...and this was with a couple of lovely supportive people (one in particular is just so understanding!)...it was a really nice afternoon....I brought a plastic box with me, I KNEW I wouldn't manage to eat everything - so I had leftovers for lunch the next day!
    • pollyanna 26
    • By pollyanna 26 2nd Dec 17, 7:19 PM
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    pollyanna 26
    Hi Prinzess . Thank you for your kind words . DD is supposed to see her consultant once a year and her Rheumo nurse in the other six months , last nurse appt was early summer last year just weeks before the calcification began . No advice when I phoned her nurse for advice .
    An appt was made for early this year with the consultant and the hospital pushed it months into the future three times so it ended up in October , dd had Norovirus so it had to be arranged for last week .

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

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

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

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

    polly xx
    • LameWolf
    • By LameWolf 2nd Dec 17, 8:40 PM
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    LameWolf
    Oh Polly I could cry for you and your poor DD, I really could.
    I really do wish these health-care bods could have to experience the suffering that we, their patients and, let's face it, their means of making a living, have to go through just for one week of their lives. They wouldn't be quite so quick to say "push yourself harder" etc, etc then, I'll bet.

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

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