Just to say hi everyone
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What??!!! And what's wrong with a little dive-bombing now and again, I'd like to know Wheeled Wagon - it all adds character ; )
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This lady disagrees 🤣
(I even went through the trouble of censoring art for the
philistinesmods 🤣)2 -
Oh great to hear from you x
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Hmmm… Maybe she needed cooling down??
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I am soooh sorry you had a fall and injury and for my delay replying @FeistyPigeon 🫂. Events have overtaken my original 'complaint' and just recovering again from double pnuemonia. Still got pnuemonia but it's only left lung now but oxygen still dropping when I move around for just 10 mins
thank you so much for your comments/thoughts I'm truly very grateful 🙏. My third opinion Consultant is at a leading, North West Teaching hospital and they've been amazing over the last year. I'll probably create a new post but in essence, they've found I've got c 90% (permanent) damage to pancreas (exocrine pancreatic insufficiency), leading to malnourishment and malnutrition contributing to c 40 infections in the last 2/3 years. My consultant's been away for a week, away now for another 2 weeks and just need someone to prescribe a pancreatic enzyme replacement therapy urgently which, disappointedly, no-one seems prepared to do in her absence as the other consultants are overwhelmed on the wards, which I get.
There's a shortage of the raw materials (pig's enzymes) and manufacturing capacity and even cancer patients (it's the same treatment) struggle to obtain it. I can't digest or absorb and nutrients without it.
I need to learn to be a patient patient! I'm not as i worry each infection takes longer to recover and antibiotics seem less effective. Plus I'll need further tests to determine cause. Another journey to embark on.
The genetic condition is not really a condition I was wrong about that sorry its actually a genetic variant (HLAB27) that predisposes me to reactive arthritis, inflammatory bowel disease and anklyosing spondylitis. I can see from my medical notes I was diagnosed with Reactive Arthritis 3 yrs ago but never told or treated.... That stopped me walking on Friday and flares badly when I've got another infection I've got Nefopam pain relief being delivered today so praying that's effective!
So in summary (sorry I never do concise do I 😅) it seems to be coming at me from all angles but as my oxygen is c 87/88 this morning I think I'm at least on a positive, upward trajectory with that!
Thank you again Feisty Pigeon, my health issues have become unexpectedly complex. I'm just trying to get fully recovered from the pnuemonia again but at least have access to the integrated respiratory team now who come to me at home
Take very good care of yourself I'll update as and when I can and get on the meds I need but I am sorry I've been tardy in my reply. If anyone has questions about any of the above please feel free to ask. I've become a bit of a little expert in the EPI although I'm obviously not a replacement for a consultant ha ha and I definitely don't know it inside out but i know that my endocrine cells are damaged too. My very, very warmest of wishes to you and I wish you a full recovery asap ❤️
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Oh Santosha, I'm so sorry to hear how you've been. North west is a long way from me too, so can only send you masses of hugs. You poor thing, having these genetic conditions is no joke. It must be scary not knowing when you'll get another infection. If you don't already, I would urge you to wear a mask whenever you're in a room with others, it's hot weather now and it's not nice if all you want is to be "normal" and sociable with everyone, but it's better than coming down another dose of pneumonia. If you haven't got a mask, get some P3 ones (they cut out almost all bugs). I get mine from Safety Supply Co (on the internet) + wear them whenever I go to the docs or hospital. I probably look pretty weird too as no-one else wears them, but it's much the best.
Not being told you had reactive arthritis is pretty dammed negligent, although it happens so often I'm really not surprised. What a good job you've seen your medical notes now, having an insight into what is wrong is so important, it can give you a head-start in avoiding problems, if anything can be done to avoid them.
At least it's good news there's a respiratory team to keep an eye on you at home now. And let's hope the pain relief is making a difference. But I do hope they get their act together and start giving you the enzyme replacement therapy. Staff being reluctant to take over because someone happens to be away is really not good enough.
Don't worry about not keeping in touch, come back when you feel up to it, not before, let us know how you're doing. Myself, I'm feeling a bit brighter now, ribs are recovering, the tremor's still there but more tolerable somehow (or maybe it's just that I try to shut it out of my mind). I'll be popping in fairly regularly to Scope, and there are lots of really lovely people here who'll be wishing the world you'll be getting to a more tolerable state of health soon. I bet you are an expert in EPI now! There's nothing like experiencing a condition to learn about it inside out.
All my best wishes + warmest wrap-arounds with my wings xxx
PS I've been told with my broken ribs, the best way to keep chest infections at bay is to do regular deep-breathing exercises. They've probably told you this already Santosha, but just in case (and if they haven't, I'd check with them first)
And have they given you some emergency oxygen as a back-up? It would be good to have around… xxx
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Thank you so much @FeistyPigeon. There has been one very good development. I emailed the secretary last night asking for the name of the two consultants who are unable to help as I'd be escalating it this morning.
I was very polite but felt a bit bad about saying that this morning so rang her she'd already escalated it to her manager. By 1.30pm today they'd sent me and my GP the letter and dose details. Next challenge finding a chemist that's got it. First 4 out of stock/don't know when they're getting any. Then the big well known chemist B had 2 boxes left/saving it for me until Tuesday which is very, very good of them. I was so relieved I cried, how embarrassing 🙄😅. Then I realised it's in the town centre (not been for 3 years) and even if i get a cab their i cant walk from the nearest parking space. Rang my cab co asking if the driver would walk with me letting me hold their arm 🤨 but they're not allowed. Then found another chemist near me i can drive to/park outside they don't have it but they can get the stock the next day. This all took hours this afternoon, I need to ring B first thing in the morning to not hold it for me.
As it was marked urgent I thought I'd get it today but the lady which deals with prescription said ooh no, it goes in the box for our pharmacist and it'll be 2 or 3 day's and that they always write urgent at the hospital. Telling her I can't eat made NO difference. So it's banana's and yoghurts still for the next few days 😬. I'm just relieved I can get the medication but disappointing there's still longer to wait. To think even pancreatic cancer patients have this struggle to obtain it is an awful thought so im trying to be grateful 🙏. Cont... d
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Thank you so much for your good wishes and hugs right back to you @FeistyPigeon not too tight 'cos of your wings and ribs 😊 I'm so glad you're on the mend in that respect. I do hope the tremors do reduce more but if they're not quite as frequent or strong (or noticeable) that's a good start 🤗 ❤️ .
Yes, my respiratory nurse sent me information about bubble breathing with a straw i must admit I've not done that yet I'll start tomorrow! And definitely deep breathing exercises and coughing differently which I have done every day and I think is making a difference.
No oxygen, apart from what's in the air around me 😅 apparently I have to wait 6 to 8 weeks after this has cleared to get referred to the oxygen clinic. Then if you smoke or vape they won't allow you to have it until you've been stopped for 16 weeks. So that's a dilemma for me, I smoked for 42 years and vaped for the last 6 yrs, not one of those tanks with puffs of smoke but it's still a vape. My GP told me to carry on vaping as the risk of starting smoking again is high but she didn't know, I don't think, about the oxygen rule. If I stop vaping now potentially I could have supplementary oxygen by Dec/Jan. I do know i wouldn't start smoking again. Very good point about masks, I do always wear one at my health appts, I don't ever see anybody at home or go anywhere but I forgot to wear one sometimes when I've had my Tesco delivery. I need to remember that! I wore one on my last delivery because I didn't know for sure if it was viral or bacterial pnuemonia I had and didn't want the man catching it.
When it goes down to 88% I think that's still considered acceptable as i have COPD.
I need an xray of my ankles, the GP referred me to physio instead my ankles aren't very swollen now luckily but still painful (bearable) but they don't look right. I can't use my treadmill until I've seen physio but I could use my exercise bike but with minimal resistance on it. That would be helpful should I stop vaping as it's outside and is something positive to do. In fact I might get nicotine patches to stop vaping very soon.
I've got osteopenia and was on calcium supplements for several years but it got stopped in Feb due to low magnesium so I've can't do much exercise, or rather only very low intensity, as I could get another fracture. I had a stress fracture of my foot in 2019 just from going up and down stairs! It was when i was having to empty mum's house out when she went into a home. Although i did go up and down them hundreds of times. My bones have always been a bit dodgy, I fractured my wrist just pulling a weed out once 🤣. I've also got a bit of a tumour in my foot (Morton's Neuroma) which is benign and I'm just leaving that well alone!!
I was put on Nefopam pain relief the other day. Omg it isn't an opoid which I can't take. It's one tablet 30mg three times a day. I took one only at midday yesterday it was like a miracle, by 1pm yesterday until 7am today, no pain at all. First time ever, well for a couple of years. But it knocked me out and a couple of other side effects. Not took any since and not in agony today so might see if I can get away with taking it just once or twice a week.
Gosh if it's not one thing it's another 😒 🙄. But I feel like things are looking up a bit. I was a bit worried about the enzyme replacement therapy as I've not eaten sausages/pork etc for decades and would not choose to but they're from the pancreas of pigs with no alternative. So basically if I want to eat anything Ive just got to get that out of my mind. I wouldn't mind but I'm not even vegetarian 🤔😊. I'll have to avoid watching 'Babe, Pig in a City' which is one of my favourite films 🥲😘. There's a bit of an irony in me getting this wrong with me when I love pigs so much.
Right, I better go now before i start on my Badger story 🙄. Take very good care, I'm sorry my answer is so long, as my sister used to say, why use 10 words when a hundred will do ha ha. Lots of love and very warmest wishes to you 🫂 🤗 xx
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Oh Santosha, so sorry not been back sooner, it's been one thing after another, DWP, health, house falling apart… Anyway, I hope when you read this it finds you as positive as you sound from your messages. Lots of hugs for your warm wishes, and the same to you too! You sound the same generation as me, and with pretty much the same lifestyle now! Staying at home, not seeing people etc. Though I'm guessing that's the same for pretty much lots of us in this forum, forced into isolation by our disabilities. It's grim, but anything we can do to lessen the impact, like going out for fresh air etc can be a help.
That was a brainwave of yours phoning the secretary threatening to escalate a complaint! Brilliant idea, I'll keep it in mind for the future! I hope you finally got the prescription ok? That's a worry if the chemists find the meds difficult to get hold of - I've heard several news reports of that sort of thing lately. Around here the chemists will deliver it to your door for free (they do for me), have you asked them if that's possible? Not sure about Boots but the little chemists do it. If not, is there something like a voluntary organisation around there who would pick up the meds for you? Or get in touch with the local councillors, they should know someone / some organisation who could help. There are others around here who would volunteer to pick up shopping too. It's probably worth ringing around if you haven't already.
As for smoking, good job you packed it up but I know it's hugely addictive. Our generation everyone was doing it weren't they? Even as kids… I was really lucky, when we were 10 we went on a school trip to an agricultural show nearby, and there just happened to be a display of a bloke's lungs in a case (his actual lungs!) - he'd died of lung cancer and his lungs were black, and there was a pot of nicotine tar standing nearby. Got me just at the right age! Never touched a cigarette. But I know others who smoked simply to lose weight etc.
My demon was drink, which we also did from an early age, didn't we? There came a time in my 20s when I could hardly go a day without a drink. So I can really sympathise with your predicament about vapes. What I did with alcohol was gradually cut it down over time, like over a year or two, start having less and less until I was used to the lesser amount. I still drank occasionally for quite a few years, in much smaller amounts, but now I don't drink at all.
So you might find that a better approach Santosha, to cut down gradually. It's very good you're on vapes rather than cigs, that's been a big step for you. Maybe patches would be a good way to go, they probably give you a lower but steadier dose than the vapes which probably give you an instant hit. But patches would be safer long term, once your body has adjusted to lower the cravings. I've heard vapes can have all sorts of other nasty chems, and if you've got lung problems they probably aren't a good idea to breathe in.
I've not heard about bubble breathing, have you tried it now? Is it any good? It's a real shame about the oxygen, they should really make these things more available. I've seen you can buy little emergency oxygen cylinders yourself (if you can afford them, ha, ha). Might be worth it in an emergency maybe?
I do hope the meds are working now. Enzyme replacement therapy I know how you feel, I haven't eaten meat for years out of principle (or is it just pigs?). Pigs are really very intelligent and sensitive creatures. I haven't actually seen Babe, I'm afraid it would make me too sad! It's the sort of thing that keeps me awake at night, worrying about poor animals being slaughtered. But I think with your therapy, if there's no alternative you'd best bite the bullet, they are already dead so there's nothing more you can do about it, except maybe try and campaign for kinder alternatives (which you can't do if dead!).
Must go in a min, things pressing but will try and get back much sooner next time. Just to add, the best way to keep your bones strongish is to try walking, if you can. I'm assuming that's still ok for you as you can go upstairs (bar broken ankles!). Outside in the fresh air is always best, good thing your exercise bike is there + a very good idea too. I wouldn't overdo things, just slowly build up with time. That's what I've been doing.
I can imagine how you're feeling with nefopam, my doc prescribed me with melatonin to knock me out + help me sleep with these tremors, but it suppresses serotonin and makes tremors worse if you take it several days in a row, so it's single nights only! The tremors still aren't brilliant. Searching on the internet I've discovered it could be caused by nerve compression rather than parkinsons or something, good or bad news I'm not sure but have a lot of the symptoms. But still got to wait until Nov to see a specialist (and then it's just a triage to point them in the right direction…) Ho hum life goes on. But handwriting etc is becoming impossible.
Best be off, back soon. Take good care of yourself + let us know what is happening. Hope you're starting to improve with all the treatments + life's becoming a bit brighter. Lots of hugs xx
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Oh thanks so much @FeistyPigeon for your lovely message, it's lovely to hear from you. I'm sorry it sounds like you've had a lot of mither with one thing and another. I've not been on here for a few weeks now I think. UC review which drove me to the brink of insanity (slight exaggeration but asked for the same thing 6 times which I provided 6 times. By the 6th time I journalled DO NOT WRITE ANYTHING TO ME TODAY I am now considering it hounding and your constant requests are causing distress). Anyway, they didn't contact me again until a few days later saying it's complete now. I've been very low but mainly health related.
Gosh, I didn't realise your Nov appt is really for Triage. I can really empathise but it must be very difficult having tremors and not knowing exactly why. I'm finding these delays quite scary tbh. I need to see physio urgently and my referral, 4 weeks ago, I've since received a text to say it'll be 7 weeks away but that's just Triage too, not actual appt, and I've not been referred for xray of feet which are really not good. The outer ankles keep swelling and painful and the inner ankles look very indented and sudden excruciating pain which comes and then goes quickly.
I googled it and there are shortfalls in physiotherapists and radiologists, not able to keep up with the increasing demand. I think the doctor's strike I think starts this Friday so I just think here we go again. As I'd waited c 3.5yrs for my color (can't quite work out how to spell that sorry lol) rectal surgeon appt and my problems can't now benefit from surgery because I've been left so long/deteriorated I still find hard to accept.
Getting the enzymes turned into a bit of a nightmare. The local chemist couldn't get them at all after checking with 8 suppliers. B's the big chemist got them but have now told me they can't guarantee I'll get them in time for next week which I need. I'm leaving it with them as I've swapped chemists now and paid them 55.00 for the year, my other chemist delivered foc but
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@FeistyPigeon, sorry, that was the Interlude 🤣. Yes my other chemist never charged me and delivered all my meds. Now B's will do that. Apparently theyd given me two lots of the enzymes that were saved for somebody else who never came back for them. I had a dietician appt last week and been told to increase the amount I take as they're not working fully yet I've not increased them yet, well I have a little bit, as I'm scared of running out. She also said I need to go back on calcium vit d and multi vitamins ASAP but I realised yesterday she's not requested that from my gp so I've rang and left her a message as my GP won't accept it from me. Every day I've tried to get GP appt at 8am and every day I get 'try tomorrow no appts left' 🙄🙄.
I'm 62 now and live in a bungalow as I got rehomed by the council, it'll be 3 years on the1st August. I was unable to get upstairs in my cottage for over a year, luckily my bathroom was downstairs. Me and my 4 dogs all slept on the settee that was a bit difficult. When I was nursing up until Jan 23, my ward area was all on one level, I struggle with even the steps at my bungalow and there's only one at the front and back. The ambulance service have said I can now get transport to my appts I tried to book for my urgent scan appt (17th Oct) but you can only book 2 weeks in advance) and I need a wheelchair to get to the appt as can only walk c 30ft but they can organise that apparently as I don't have a wheelchair.
I've not done my bubble breathing I'm glad you reminded me. I've cut my vaping down a lot and leave it in the kitchen instead of sitting with it!! I've gone from three bottles of vape liquid to 2 in a week. Next plan is to go to one bottle then change it to 6mg instead of 12mg. Then to 3mg.
I'm not a vegetarian but I just don't eat pork or chicken or lamb. I occasionally nick a bit of my dogs chicken but it always makes me feel ill so I don't know why I do that. I'll eat beef but haven't since c Feb but that's just because of the cost. I eat tuna (tinned) every week but its probably more Mercury i suspect! I dud try Quorn food and was misdiagnosed with coeliac disease 2 yrs ago and was on a gluten free diet for c 4 months but was very glad to come off that and wouldn't be able to afford it now anyway.
Please take very good care of yourself FeistyPigeon. I'm trying to get my mojo back it seems like a never ending effort. With my very, very warmest wishes to you ❤️ 🫂. I'll write again soon xx.
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