Some good news for a change....: Well this afternoon i... - NRAS

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Some good news for a change....

sylvi profile image
21 Replies

Well this afternoon i was at the hospital for psychio on my knee. My lovely young man who has been lookng after me was very pleased with my progress. So much so he discharged me. I wish my other complaints were as easy to get over.Never mind i can't have it all.

I think what my rheumy nurse said on wednesday is starting to sink in. I was expecting the increase in the mtx,but not the other. Now you might think that i am being silly and you would probally be right. I have never felt as ill with this disease as a lot of you have and do. I have had such a long spell with not many flare ups and this session of flares are really not what i wanted. I am not worried about taking the drugs they give me for my ra. They are there and i need them, but i just thought that it wouldn't happen to me as i thought i was coasting along nicely. I am so good at supporting others and i don't see what is front of my face. Strange that. I think this all started about a month ago when my potassium levels went haywire and then my feet started to burn and hurt. Hence i am where i am now.

I hope this weather soon starts to get better and can we have some warm and sunny days please. My love to you all my friends.xxx

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sylvi profile image
sylvi
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21 Replies
aligator profile image
aligator

No, you are not silly, far from it. Yes, you do a brilliant job of supporting us& making us smile. Your honesty about how you feel & what is happening to you gives confidence to us to share without fear or judgement. Your fears &concerns matter we can only trust in our medical team for good advice & family &friends to love &support you.

Sending you a hug,love Alison x

Sylvi I have never actually known you not be in some degree of pain so I think you are just perceiving that you aren't as ill as some others on here with your RA and Fibro. Perhaps you should go over some of your previous blogs if you don't believe how badly affected you've been ever since I've been coming here - even though you are generous and kind to others too. You are right not to worry unduly about the affects of these drugs because we only get one life and it's the quality of that life that counts. So just count your lucky stars that you have such a good rheumy team and that you are hopefully going to be put on meds which really might put you in remission at last! Tilda x

watson3 profile image
watson3

So glad your lovely man recognised your progress.

We benefit, from your fantastic sense of humour and your unconditional support. I often think we do suffer more than we admit to ourselves or others.

So glad I found this site and the super friends I have made here. Including your lovely self.

Gentle hugs to all my friends

Carole

sylvi profile image
sylvi

Thank you girls,i will call you girls as i like to think that we would all like to feel like girls.Just to add to my woes i now have a stinking cold to add to the mix. I have a throat that feels like sandpaper. Its silly o'clock and i am on the earl grey and hoping i can get some more sleep down here and give my darling hubby some rest. Lord love he knows my every move in bed and i am sure he doesn't get much sleep when i am like i am,hence i come down here so i sleep more upright and sometimes i do sleep better.

So here's to us all that can't sleep and to those of you that can sleep peacefully.xxxx

Munchkinella profile image
Munchkinella in reply tosylvi

Sorry your up at 'silly o'clock' Sylvi, and that you now have a cold to contend with. Hope you can get some sleep my lovely.

I'm online because it's actually 3.20pm here in Aus lol. Always here for a chat if you find yourself up again.

Sending gentle hugs. Love Janet xxx

well done I have been awake since five!!!

cathie profile image
cathie

If you want to talk about biologics id be happy to help. Ive just ten years experience of one

Up in a whirl this morning because of grandson sleepover. When i told him about remission he said hed be in charge of my training and would start with pressups!

I think just a night with him will do!!

Hope you have a good weekend. Garden is starting to happen

Xxx

petalnumber2 profile image
petalnumber2 in reply tocathie

Hello Cathie,

You must have been one of the first to be offered biologics and if you have been on the one treatment for ten years it must be working OK for you, which is very good for you and very encouraging for us novices.

Since being offered biologics a month ago I've read quite a lot and I don't feel as apprehensive as I did to begin with, But there's nothing like first hand knowledge and I would love to hear anything that you think is useful to know.

I hope you don't mind my cheekyness in asking and I hope your grandson didn't win his way with the pressups! June xx

cathie profile image
cathie in reply topetalnumber2

ok I'll do a blog! XX

allanah profile image
allanah

Great news the physio worked for you! Keep strong Sylvie cos selfishly we need you! Xx

With you all the way Sylvie. You know how much you have helped us all on this site. Whenever I've had a question or problem, you've been there, and I always value your answers.

Hoping your new regime will sort things out for you and you begin to enjoy life again. Weather forecast is not good though, so maybe we'll have to wait a bit longer for the joys of spring!

Keep that pecker up Sylvie,

Love Carolyn x

sylvi profile image
sylvi

Thank you all. Just been and got a chicken for sunday lunch and now i am home and i think i might just have a sleep..xxxxx

petalnumber2 profile image
petalnumber2

Hello Sylvie,

Well, it's not very often we hear you complain, so you must be really suffering. It's our turn to give you some support and caring. I have to say that Tilda has said everything that I would say to you, she has a lovely way with words!

It sounds like you have been offered biologics like me. If so, and you are begining to read a bit about it, you are probably a bit shaken by the side effects just as I was to begin with. But,some of these drugs have been in use for 10yrs or so and though they have to make us aware of the worst aspects of them, much has been learned during those years and from what I learned from Victoria on the NRAS helpline, the results so far have been very positive.

Cathie obviously has a lot of experience and knowledge, and I note that she has kindly offered you some help which could give you some peace of mind. I'd love to have a chat with her too! Thank heavens we are not alone with this awful disease.

Anyway sylvie, take care and wrap yourself up warm, I hope you soon feel better.

Lots of hugs, June :-) xxx

sylvi profile image
sylvi in reply topetalnumber2

June i think i am going to try and get some sleep. I don't know what meds they are going to put me on yet. When i know what i am getting i will be picking everyones brains for advice. Thank you . love sylvia.xxx

miss profile image
miss

Hi sylvi i am very happy to here that at last you are getting the help you so deserve as others said tilda has a great way with words. (wishes i was as good) sadly not. However i would love to say hope all go well enjoy that sleep. I'm in for a very busy weekend got very busy week ahead. Think Monday is not going to be good day best wishes xxx

sylvi profile image
sylvi

Sleep has eluded me, so i have taken some beechams in a hope of clearing this cold. We are going out for a meal at our daughters place and her housemate is cooking and he is a chef at a local hotel. So i hope i do justice to his cooking.xxx

cazh profile image
cazh

Hi Sylvi, hope you have managed to get a restful day today. Good news about the physio discharge. My lovely physio discharged me a couple of months ago. I was actually sorry not to go anymore as he was sooo nice! Has anyone said what was the cause of your burning feet? Just wondered as you mentioned your potassium levels. I'm sure my feet started burning (mostly at night) after I'd received the news that my potassium levels were too high. Wondered if that could be anything to do with it. Probably not though,knowing this confusing disease.

Hope you manage to enjoy the rest of this weekend with the awful weather we're having at the mo.

Caroline x

sylvi profile image
sylvi in reply tocazh

Caroline, my foot problem is called reflex sympathetic dystrophy it is a malfunction of the nervous system . If you look on the internet it will tell you all about it. I sweat,but it is a cold sweat and i am clammy with it.We are going out shortly to my daughters place as they are cooking dinner for us and joeys mum. They are housemates. I am fed up with being ill. Lets hopoe tomorrow will be better and this wretched cold has gone.Love sylvia.xxx

cazh profile image
cazh in reply tosylvi

Thanks Sylvi, will look it up and mention my burning feet to rheumy nurse in couple of weeks.

petalnumber2 profile image
petalnumber2

Enjoy your evening Sylvie, food lovely food is always a sure winner when it come to a

pick-me -up, lovely jubbly :-)

Poor you Sylvie, i am sending you all my support and hugs, I have the bad feet as well, though it is something else that the doctor called it. have a nice weekend.

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