Support thread for those awaiting medical appts,tests and surgery

[ohyouBadBadkitten]

It seems that there is probably rather a lot of us who are impatiently waiting to see consultants, have tests or waiting for surgery. So a thread for you to vent in or post your 'hooray's'

me. Am waiting to see my cardiologist. been a bit of a catalogue of delays and getting lost in the system. I have a wonderfully supportive gp who has just calmed me down after me losing the plot a bit when I found I wasnt on the appt system.

How about you?

I think all people need some kind of spirituality in their lives, whether it is religious or humanist. Maybe we feel the need most when we are at our most vulnerable.

How is everyone on this most rainy of days? OYBBK did you ever get your appointment through for the EP? If not, I think it would be worth checking with his secretary that the referral letter has been received. I realise that he is busy, and it could be many months before he has a slot in clinic, and even more before the ablation. However, I would check that you haven't been forgotten remembers how my letter vanished in the system.

Clearly I'm not the right person to advise on tracking own echo results .

That's actually a really good idea mad, I've not heard anything yet ( and felt that my hr was doing its tachy stuff in the night for a short while) ill try to check up on it tomorrow. It would be rotten if it had got lost.

Over tired today tbh. How is everyone else?

Your tachy heart returning is not what you want, no wonder you are over tired. I'm a bit tired tonight too because I was out with friends last night, and then couldn't sleep. I haven't had a proper walk today, because of the weather, and I need my fresh air.

The weather has been really grim. Bleuch.

Reeny I'd like to learn more about Buddhism. I like its view of suffering and the way in which it's creeping into more mainstream thought. It's a perspective which is there within Christianity, too, though not so clearly so... and many forms of Christianity do deal with suffering and illness very thoughtlessly.

kitten I agree with mad on this... I would check yet again with your GP than the EP referral is in motion. The tachy stuff is worrying. Do you think the precipitation levels affect it?

I made it to the GP yesterday. I went in all prepared to discuss my escalating pain, ongoing anxiety and the extent of the possible/probable connection between the two. The GP sat me down to tell me about new career possibilities soon to be emerging for people with my qualifications and how such an area might provide less physically demanding employment than what I'm currently doing. I came home and googled around to find that she is spot on about the new opportunites, but it felt a bit odd receiving unsolicited careers guidance from a doctor... though nevertheless most hugely preferable to being whisked off in an ambulance. And conversely speaking, of course, I've never been given painkillers from the JobCentre.

Oooops sent too soon...

Rabbits, am sorry you're so sore. I've heard it said that renal pain can be the most intense form of chronic pain... and you have so much on top of that you're dealing with. I know what you mean about being stressed causing DCs stress and leading to difficult behaviour... what I don't understand is those who manage to cope with pain/illness without it affecting the way they feel. Do you get manic episodes a lot?

That's actually really nice that your GP was urging you on in your career. It shows that she thinks highly of your abilities, and also that she doesn't see any health problems that you have being a barrier to success in life.

Certainly better than being whisked off in an ambulance, but I also hope that you managed to talk about the actual reason for your appointment.

Yy Rabbits, I always find the children play up when I am not on top form. Kidney pain plus arthritis sounds like a nightmare combination.

Not entirely. I'm currently somewhat less willing than I was a few years back to accept assurances of symptoms being anxiety related... but equally, it's hard to imagine what could be wrong that the ECGs and X-rays would have missed.

But yes, I agree with you that it was sweet and very thoughtful of her.

Hi rabbits,
How are you feeling now? Have you been able to get on top of the pain? Do you take any meds for pain relief? Any alternative methods too like cold / warm packs? Tens?
I understand too how difficult it is coping with pain. It is really horrible.
I've been told to accept that the pain I have may last the rest of my life. I am awaiting more surgery, I'd be so grateful even if it just reduces a little, but I know it will never go.
The pain is so severe I have to take fentanyl and morphine. It takes the slight edge off, but I still remain in a lot of pain.
How old are your children?
My boy is 1 tomorrow. I also find he is up to more mischief and difficult when my pain is at its worst. Maybe he can sense it and he feels on edge, and maybe it's my own perception which is much more sensitive when im at my worst.

Hi breast milk,
I believe pain and illnesses do affect everyone. How people react to this depends a lot of things, their personality, their experiences, their views / perceptions, and so many more.
For someone, a certain type of pain may be agony and terrible the worst type of pain ever for them, but for someone else, yes it is very painful but they have experienced even worse types of pain, so to them, its lower down the scale.

For me, I have loads of times, I'm awful, can't cope, climbing walls in pain, scream crying in pain, when the pain is extremely severe. But i don't tell people , and most friends / family don't see this side of it.
I've been in constant severe pain 24/7, no break at all from it, for 5 years now (since I was 20). I've gone through many episodes, ragging my mind, trying to figure out how I'm going to cope, I'm not coping, fed up, etc. Going out of my mind.
During these 5 years, ive had to accept, (I still battle on the word accept, how can I accept this) this pain will be for the rest of my life. (I still hold out hope for new miracle medications and operations). And I have to find a way of dealing with this, or it will win, over take my life, and kill me. (there are times, ending my life has come into it, and I have tried :-( this was before my baby boy came into my life)
So I'm constantly looking for techniques, skills, to help me to change my relationship with the pain, and live my life.
That's the only choice I have. I could easily sink deep down into darkness and back into depression, and stay there and never return. I don't want that.
So I'm using all the little energy I have, to change my mindset, to change my views, re-train my brain, and help get support in place if I see it dipping.

Hi breast milk,
I believe pain and illnesses do affect everyone. How people react to this depends a lot of things, their personality, their experiences, their views / perceptions, and so many more.
For someone, a certain type of pain may be agony and terrible the worst type of pain ever for them, but for someone else, yes it is very painful but they have experienced even worse types of pain, so to them, its lower down the scale.

For me, I have loads of times, I'm awful, can't cope, climbing walls in pain, scream crying in pain, when the pain is extremely severe. But i don't tell people , and most friends / family don't see this side of it.
I've been in constant severe pain 24/7, no break at all from it, for 5 years now (since I was 20). I've gone through many episodes, ragging my mind, trying to figure out how I'm going to cope, I'm not coping, fed up, etc. Going out of my mind.
During these 5 years, ive had to accept, (I still battle on the word accept, how can I accept this) this pain will be for the rest of my life. (I still hold out hope for new miracle medications and operations). And I have to find a way of dealing with this, or it will win, over take my life, and kill me. (there are times, ending my life has come into it, and I have tried :-( this was before my baby boy came into my life)
So I'm constantly looking for techniques, skills, to help me to change my relationship with the pain, and live my life.
That's the only choice I have. I could easily sink deep down into darkness and back into depression, and stay there and never return. I don't want that.
So I'm using all the little energy I have, to change my mindset, to change my views, re-train my brain, and help get support in place if I see it dipping.

what I was trying to say is, to your question to rabbits, severe chronic pain effects everyone, and in what ever way we choose to cope with it, it will always affect the way we feel.

Sorry all, will catch up tomorrow, dh back from being away.

BM thanks for plumber info.

My appointment with respiritory clinic is now in sight....friday :) Need to write a wee list of things to discuss. Am quite breatheless again today as got a new airfreshner in car....so silly of me! Its a pink ugg boot thing and had one before but must have been when not as bad. Woken up with chest pain and breathless and oxygen dipping when sitting which not like me so am on a nebulizer just now - sorry neighbours for noise!!

rabbits how long do you think you will have to wait to find out what going on any idea?

badkitten yes weather mad isn't it. one min its dry and sunny and I have girls in park (4yr just mastered no stablisers so want to go all the time, which I am happy to oblige to as i like being out) and next min you running back to youse cos its pouring and hail!!

Oh and a [beverage] for you all and a am feeling generous this morning

oh even sorry

Breastmilk - I don't get manic without severe stress usually, I had a breakdown in January after dealing with my stepdad's brain haemorrhage and due to a medication change meaning I was trying to deal with discontinuation syndrome and everything else. Before that it had been years. But I feel a bit like I am getting back there again without any real change in circumstances, I don't understand it, so will mention it at the GPs appointment next week.

Reenypip my children are six (boy) and three, soon to be four (girl) and I am a single mum, so it does get tough sometimes, but I do try to manage it. Sent off an email requesting an assessment by social services adult team last night though, anything extra is a bonus, perhaps they can help so that it's easier to deal with pain.

I'm no better today, but I am coping better with the pain. I have started taking tramadol again, despite it making me more nauseous than usual, I am going to ask the GP for anti-sickness whatever next week too.

giraffe I see the GP next week and I will be asking a tonne of questions, think I haven't been forceful enough as I work on little information. I have been re-referred back to the Urologist three months early as the prophylactic antibiotics are not working, so I will have a better idea then what's up. I will be demanding pain clinic referrals too, and explaining in more detail why I am struggling to cope at home, to hopefully get a little bit more understanding from the doctor.

Hope everyone is as well as they can be today. Felt like I was walking on broken glass this morning, so I think it's safe to say I am flaring. Only six days until my GPs appointment and hopefully I can change something to make things easier.

Hi giraffe,
Hope your appointment goes ok tomorrow. Good idea to write things down that you want to mention, coz it can be forgotten when in there with the doctor.
I get frustrated with myself after I get home, I realise i forgot to ask something.

Hi rabbits,
Can you access Homestart In your area?
Hope you get things sorted. Definately ask for some anti emetics, sometimes they help, might have to try different ones if the first doesn't help.
I take daily cylazine and domperidone. And if they dont work, ondanszotron.

It's my baby boy First Birthday today!
It's gone so fast! Been amazing seeing him develop from a newborn to a toddler.
I love him so much!
*Happy 1st birthday Cody!

I have Homestart support, they're out again on Monday. Love them to pieces.

And happy birthday to your little boy.

Happy birthday Cody :)

Realised that yesterday's exhaustion was the start of a full on arthritis flare. Not fair. Hmpfff. I need to slow down. Was so glad to be feeling well that I'd rather jumped back into life in a rather mad way. Not had chance to check with consultants sec today (and I just need to crash now)

Hope it goes well at your appt tomorrow giraffe. BM WELL DONE!!!!!!! For making it to your appointment :) it sounds slightly odd but hopefully constructive?

On a positive note I saw the dentist today for a check up. He said I have excellent oral hygiene. I didn't tell him it was only last week that I saw the hygienist!

did you get a sticker kitten?!

I nearly asked for one!