LUPUS UK
21,914 members17,348 posts

Everything At Once 😱

I keep on hoping for, but not really expecting, news about whether my PIP has been renewed. Phone call this morning from an official making the final decision ( very kind lady). The questions were about how much I get out on my own. So, how long does my once a day sniff and piddle around the block take? Not me - the dog - no sniggering at the back please. I said about 20 mins, but never in bad weather ( which includes hot, wet, cold or windy) Do I go to the park? No, same route everyday. " You like knitting, do you go to the wool shop?" " How do you get your shopping?" Every answer was "online and delivered". A few more questions like that and I'm afraid I got tearful because there's nothing like getting smacked in the face by suddenly realising how limited your life is.

Next, blood tests are showing my kidney function is not as it should be. So many tests that I've resorted to telling the nurse to aim for the middle of the last bruise because it's hard to get a vein elsewhere. I told the nurse I wasn't going for any more tests until a GP deigned to explain why, and whether it is something or not to bother about. My GP was supposed to call yesterday about it all, but didn't. No call today yet, but they are aware I see the rheumy this afternoon.

That'll be another "aim for the bruise" moment. Meanwhile I'm just #%¥#% with it all. My mouth has recently become so dry that meds stick at the back of my tongue and unless I've had a sip in the last 5-10 mins I go all croaky.

Oh, did I mention a sliver has come off the back of a front tooth? At least that doesn't hurt 😁

9 Replies
oldestnewest

Sorry you're having such a tough day, Lupi. 'Aiming for the bruise' is a very good metaphor, like Beckett's 'You must go on. I can't go on. I'll go on'.

I've learnt which nurse to choose for bloods now, as expert technique makes a big difference. My favourite says that a lot of misses and bruising stem from taking blood when the vein is under too much tension - 'always keep enough of a bend in your elbow to allow the vein to relax'.

Funny enough, I've developed a distinct notch in one of my front teeth recently. Part of turning into proper snaggle-toothed old wolf warriors. x

2 likes
Reply

I like snaggle tooth! Yes, I said " go for the bruise". She did (bulls eye) and was proud that the bruise was left unchanged when she had finished!

A pleasant consultant who actually kept saying "Anything else?" Followed by "You"ll think of them after you've left". My kind of doc! I saw him last time and will the next which is rather good news.

He was most interested in my rubbish muscle tone and increasing fatigue plus dry mouth. When I was weighed I was pleased at appearing to have gained until the nurse suggested I put my bag down 😂

I have agreed to a referral to a dietitian but warned that I'd throw a mini muscled foot stamping if I got the same "full English breakfast" advice as last time.

Also been referred to someone with a special interest in Raynaud's. Needing bedsocks in this weather is very strange. I've seen excellent reviews about the Raynaud's clinic at this hospital so I'm happy.

Best rheumy appt I've had in spite of the classic blank brain when I got there.

1 like
Reply

Sorry you are still waiting for your pip result , I was awarded standard care for daily living and nothing for mobility which I think is because I said I walk the dog 2 short walks a day , I didn't get any points for communication despite being totally deaf in my right ear following surgery to remove an acoustic neuroma . I don't wear a hearing aid because I can't it couldn't work in my case the hearing connection to the brain was cut in the surgery . I think I should get the 2 points for do you need an aid to hear because I do need one it's just it wouldn't work for me which makes me worse off than someone who benefits from a hearing aid , I should get points for hearing difficulties aswell , so appeal for me . I'm sorry you are having problems with your kidneys , have you not had kidney involvement until now ? Let's hope it's something else that can be easily sorted ,you may be dehydrated which could explain your dry mouth and would affect your kidney result let us know what your gp says , take care x

1 like
Reply

It seems to me you're on good ground for extra points for the hearing and hearing aids questions. Good luck with the appeal.

My GP finally rang about all the blood tests ( I've had no kidney problems before). They were most concerned that my potassium levels are so low I could get heart failure. I explained, again, my problems eating and getting the food through. We've settled for the moment that I google for potassium rich foods I can get down, and await a dietition's advice.

Wait and see what the rheumy tests show.

Reply

Oh well I am glad you don't have kidney involvement at least , when you have kidney involvement you have to avoid foods high in potassium ,I hope you find foods that are high in potassium which you can digest , I know bananas are and you could mash them , good luck with it x

1 like
Reply

Thanks Buffy. I've found some surprising sources I can tolerate, but bananas are the one we all know! Was it from when the tennis players eat them between games?

Reply

Not sure I just know I haven't to eat them because of my kidney disease which is annoying because I like them x

Reply

Oh Lupiiknits, a bad day. I feel for you. Sometimes we battle on and just don’t think about it, until you need to say it out loud. I get that. But a good cry can help sometimes and we then pick ourselves up again.

I still hate bloods being done! Ridiculous I know! Three children. Lupus diagnosis for over 4 years. With the MMF I’ve gone from weekly, to biweekly, to monthly to bi-monthly bloods and still hate it. So having bloods done from a bruised area, I just can’t imagine. I would refuse any more until I knew what they were all for. Shouldn’t your arm be allowed to heal?

Also, I hadn’t read your post, but I’ve just posted about having a dry mouth! Really bad this week.

I won’t keep you any longer as you are probably going out for your sniff and pee before bed.

Wendy xx

1 like
Reply

Thanks Wendy. The evening sniff and pee is when Blue goes solo and all I have to do is open the door 😂

Reply

You may also like...