So following some slightly strange and one rude comment following my last post I thought it prudent to clear a few things up.
1) I’m no idiot
2) I reside on this planet
My post was designed for some positivity; which I think we’d all agree is somewhat lacking on here.
Now I appreciate that many of us are unable exercise; however whilst I can I will and will not be made to feel bad about that.
I’m fully aware that my next horrific flare or set back is always around the corner; but until then I’ll be as active as possible.
So; today I’m going to the gym, then I’m going to have a few beers watching the rugby. Why not ? As this time next week / month / year I may not be able to do so.
And I’m going to enjoy it whilst I can.
Kindest regards
The Village Idiot (aka enjoying it whilst he can).
Written by
Jamarruk
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I missed this Jamarruk and I am sorry your were treated this way. You should have reported it to NRAS. Your no village idiot and you made a good point your going to do it while you can as come next week/year you might not be able to as I well know. So enjoy your Rugby and yes you might pay for the next day, but you will have enjoyed it, xxxx
I have no problem with encouraging exercise, since I bore on about it all the time. And everyone can do something - even seated or lying down.
But I do have a problem with drinking as excess alcohol is worse for you than many drugs. A pint of 5% abv beer is nearly 3 units of alcohol. So drinking more than that is not something to praise.
I do feel very strongly about alcohol being seen as harmless fun, when actually it is a powerful drug. And especially powerful for many people with RA who also take drugs that put pressure on liver and kidneys.
I loathe the UK drinking culture, and the casual way people talk about drinking more than is sensible. So if this patronising then so be it.
It’s excessive imbibing that does the harm...& especially the binge drinking on “special occasions.”.....which I never understand as a hangover is inevitable.
Also, a lot depends how your body processes alcohol.
I have a glass of wine with dinner most days.......
Rheumy is happy with that & my kidneys & liver function tests are all good.
I agree with you Helix, I have family who don't drink and are looked at as oddities. When they go for after work drinks they are still on their one glass, whilst the majority have downed 10+, and are too ’three sheets to the wind’ to notice your lucky escape home.😆
I didn’t find it patronising. Alcohol is a legal drug but can be harmful. I’m not against it, I do drink occasionally and socially but I think we need to recognise that many people drink to excess.
The thing is your posts recently don’t come across like you think they do so do not make people feel positive. No excuse for people to be rude but some people are suffering so it’s not possible to always be positive.
No apologies from me for making that remark. This is not the first, though probably the least inflammatory post from you, and if you haven't realised that by previous reactions of members then you've only yourself to blame for getting such a negative reaction. Perhaps my words were a bit harsh, but if you have a problem with what I said then go ahead and complain to the administrators as I've a lot more to be concerned about than this little episode. This will be my last correspondence with you.
I'd rather stay as well as I can do, which means no alcohol, my wee body doesn't cope with even teeny amounts anymore. And not overdoing it physically or I'll end up housebound for a couple of days with a flare.
If your disease is mild or well controlled good luck to you, but please be kind to those of us who are not as well as you. Please don't be disrespectful to people who are ill.
Well I'm having a poor day today and really don't want to be told to cheer up. I'm quite ok having a quiet day at home, taking things easy , so that I am ok for the weekend when I've planned to meet a friend. You just don't know how others are feeling, they don't always feel the same as you. I'll say it again , please respect that.
I agree with Lolabridge. It's easy to be positive and upbeat on a good day, but please do bear in mind that on any particular day another person may be bedridden in agony so exhorting them to exercise and be positive us not very empathetic!
Hiya Jamarruk. Positivity is helpful, no doubt about that but sometimes that help or cheeriness can be misconstrued when in pain. In the main people are here because they're not doing too well, you may have gathered from previous replies to your posts. I haven't responded before now I admit basically because I wasn't sure how to take you, if you are genuinely trying to boost morale or being sarcastic but either way members respond according to how they find you.
Maybe you could gauge if your posts are helpful by the number of responses ('Likes' as well) & reciprocation? If you're not happy with any response you have the option of using the Report button, far better than trying to diffuse the situation yourself & risking upsetting the apple cart further, particularly through pm'ing directly.
Heelsy, I'm all for positive posts from people saying how well they are doing. It gives hope to other less fortunate members, especially those who have only recently contracted RD. But this fella just keeps repeating the same sort of post over and over with little thought by the seem. So is it any surprise that someone would think it's nothing but a wind-up! Even if he's genuine, which I still have doubts about, it seems as if this sort of reaction was needed to make him realise that not everybody takes his posts in the best light. I probably could, or should have been a bit more civil with the offending response, and would normally have ignored, or at least give a less derogatory reply to his post, but I just happened to be not in the best of spirits after a long trip to see my chest consultant yesterday, which was a waste of time by the way, around the same time as Jamarruk was having a good time exercising and drinking lager.
I'm with you not agin you Wishy. Care & thought needs to be taken, by any one of us, before possible inflammatory (no pun intended) posts go live. As I say gauging the responses from previous posts should be enough to know if they are being taken as the OP does actually intend. If they aren't then don't post them, my thoughts anyhow.
It's vexing when you have a wasted hospital trip, whatever the reason. We had one only the other week. My h was down for an experimental spinal nerve block. We'd to be up at 5.30am as it was being done at a hospital a good way away & we'd to be there for 8am. He had his blood sugars tested & by 9am he'd still not been taken to theatre. Eventually a couple of nurses (safety in numbers?) came to say sorry that it's not Matron delivering the news but she'd been called to a meeting. Anyway, the Surgeon had phoned in sick & despite trying Matron hadn't been able to locate another who could do it. Annoying but to give them their due an hour after getting home they phoned with another appointment for next month.
That must have been disappointing, especially as you had to get up at such an ungodly hour! Nothing as bad as that with my appointment as you can see below. Why is h having a spinal nerve block and what do they hope to gain with the experimental type?
I know you're wiv and not agin! I just felt the need to explain myself a little more and agreed with much of your response so decided to reply there.
Not exactly a complete waste of time, but the big high tech lung function machine was out of action so I had to make do with a small lower tech machine, which is not capable of doing the more in depth testing of the high tech machine. Hence yesterday's results could not give a true comparison with last year's, which were done with the high tech machine. However, as best the consultant could tell yesterday's results were around the same as last year's so things could be worse I suppose. It wasn't only that, the general tone seemed less hopeful than previous appointments. I've now been discharged as there's nothing they can do for me, something I was already aware of so no big shock there. The consultant is arranging an appointment at my local hospital to have another LFT on the high tech machine they have there, which suits me fine as it's 15 miles nearer home than the chest clinic and with less traffic to contend with.
He's also going to write to my rheumatologist (rheumy clinic is also at my local hospital) to ask her to take over monitoring my lungs and to report back if there's any deterioration. As the condition is untreatable I think the chest consultant is interested to see if baricitinib, which I've restarted today, will have any effect on my lungs. Last year he told me that they are hoping it will help people with lung disease but could not guarantee that it wouldn't do the opposite. Other meds they think also have possibilities of treating, or at least helping manage some lung conditions, are azathioprine, rituximab and mycophenolate. Of the 4, and according to the consultant, mycophenolate appears to show the most promise to date though as yet there's little evidence that even this drug will be any benefit. I'm not sure if even proper trials have began.
I'm going to ask for an appointment with my rheumatologist to see what she thinks about what the chest consultant had to say and about me trying mycophenolate. It's probably more high risk than baricitinib regarding infections, but I haven't had a UTI for what must be getting on 3 years now so it might be worth a go.
On a brighter note, all 3 leg ulcers have almost healed, hence how I've started back on baricitinib today.
Apologies for the long post, I do tend to spill it all out on times! Just hope you or anyone else find it an interesting read.
Haha, a bit slow on the button there wasn't I. You're more optimistic about Wales than me, but I'm an eternal pessimist where the Welsh rugby team are concerned. I'm usually wrong with my predictions so I'll stick with saying that I think they'll lose on sunday.
Hi wishbone, that’s so interesting as I recently had lung investigations (Bronchiolitis, nothing like as severe as what you’ve got tho I think it’s RD related) but ...the consultant said they were now considering biologics for lung issues like severe asthma etc so there may be some hope they can halt damage/ease symptoms. She was interested in one I was on as breathlessness improved on it. Truly hope so for your sake, good luck with baracitinib & glad your leg ulcers healed 🙂
I was hoping to hear that someone else's doctors have also said about the possibilities of biologics helping lung issues...I was beginning to think I had a delusional chest consultant! One thing he told me on tuesday that I did find puzzling was that my current high inflammation will not exacerbate my lung condition like I've been concerned it would, which came as a relief. Apparently they work off a different mechanism to each other... his words not mine! Yet when I had my first appointment with him he told me that RA caused my lung condition, so now I'm not sure just how it was responsible. As previously mentioned I need to discuss things with my rheumatologist. What biologic are you taking?
That’s weird isn’t it, because I would have thought the same as you, that inflammation caused it. I’m on benepali, Etanercept biosimilar, they seemed excited about that as one to add to list, if less explanatory about what caused mine? 😊 🤞for you
Wish I could but Benapali's a non starter for me! I had to stop taking the original enbrel because of frequent infections.
It is indeed weird as I've asked my rheumy nurses if high inflammation can affect my heart and lungs and they said yes. Maybe I should have asked the chest consultant to explain but I didn't think to at the time.
Good luck with your lungs and thanks for letting me know what your doctors said.
Hope baricitinibs good too, I knew you couldn’t take Enbrel. That’s the trouble with this, it’s such a multi disciplinary disease, you get conflicting advice all the time 🙃 I wish i’d asked mine to explain more too but then I forget everything if not written down lol 😆
Hmm, you do seem to know a lot about me don't you! lol
I'm hopeless at remembering what to ask too. Recently I've been jotting down things I need to ask in a small notebook. I've had a some funny looks from my doctors when I pull out the notebook and say I've got a couple things I need to ask you!
Same here with notepad 😉no, just remember older posts: long term memory’s fine, it’s day to day that defeats me 🤣 I don’t think it was just one biologic she was talking about so yours may well be good too 🤞
According to the chest consultant mycophenolate looks the most promising med so far followed by azathioprine and rituximab. I would think it's still very early days for baricitinib as it's a relatively new med. You watch, knowing my luck I'll convince rheumy that I should change to mycophenolate and baricitinib will turn out to be the miracle cure!
Hahaha you're very organised with your notebook wishbone. My questions are always on bits of paper which I then proceed to lose. Lol. Good to hear your leg ulcers have almost healed.
Guess I can thank my time spent serving in Her Majesties Forces for being highly organised....even though I bought myself out after just 10 weeks! haha It cost me £20, almost 3 weeks pay back then. lol
Apols for delay. Been fighting with a very poorly iPad (aged with walking stick old) but new one arrived this morning so will be typing quicker than I ever have.
It beggars belief. Why have you attend when they know what's needed & it's that very thing that's not working?! More so when it's a comparative they're after. Anyway, I hope the appointment isn't long coming then you have all the facts. Not sure about offloading that part of your care onto your Rheumy, ok, problems with lungs can be part & parcel of RD but they're not Pulmonary Specialists & have plenty to deal with of their own speciality don’t they? I do hope he's wrong re baricitinib & your lungs do benefit. I'd have a rootle round, see if there are any trials, it's worth a look anyhow. Gosh, is it 3 years since you had your last UTI? Where does the time go.
Really pleased the ulcers are responding, I’m sure you are because they sounded nasty, the first one certainly.
Don't worry about spilling out, I’m not exactly succinct, I’m trying but also accepting I have terminal typing diarrhoea!🤮🤣
I thought it a bit odd when he said that rheumy would monitor my lungs from now on. I don't think he would have bothered if I wasn't taking baricitinib. He was going to discharge me last year until I told him I was hoping to start baricitinib soon. It was this that made him sit up and tell me about the possibility of it helping people with lung disease. Think I need an appointment with rheumy to discuss a few things. Would have phoned the helpline this morning but I had to go to podiatry this afternoon so may have missed the return call.
Just checked my post history and yep it is close on 3 years since my last UTI, which was when I spent a week in hospital with urosepsis. What a fun time that was, especially that septic hip episode a year before! Right or wrong, that thing scared the life out of me!
Once again there has been no harm intended. And the post was meant to be positive; apologies for any offence caused.
I do know what it’s like to be in a flare and equally know what it’s like to waste time in the hospital. Had my 3 year routine appointment on Monday which involved sitting in a waiting room for 2 hours for a 5 minute appointment with someone new who clearly hadn’t read my records!
I’ll put more thought / consideration into ongoing contact on this sight.
However; I am doing particularly well at the moment (which may last but it probably won’t!) so I will enjoy myself !
Thanks for all the advice; although I’m still heading to the pub 😉
my go to drink on a good week is a lovelyvG&T which i savour and then I go back to lime and soda.
we all have a thing we have or do to make us feel good.
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I just felt the need to explain myself a little more and agreed with much of your response so decided to reply there.
Other meds they think also have possibilities of treating, or at least helping manage some lung conditions, are azathioprine, rituximab and mycophenolate. Of the 4, and according to the consultant, mycophenolate appears to show the most promise to date though as yet there's little evidence that even this drug will be any benefit. I'm not sure if even proper trials have began.
lol
How was your experience with steroid injection?
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