Shrunk, squinty but relieved!: Hi everyone. Hope you... - NRAS

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Shrunk, squinty but relieved!

pennylane profile image
24 Replies

Hi everyone. Hope you are all having a good day & as pain free as possible.

I've had a busy week so far, been doing a tour of hospitals. Was over the other side of the city for a bone density scan on Monday. Quite a walk to the clinic & my poor legs were aching but made it and in I went. I was measured first and having been 6 foot since 17 was surprised to be marked down at 5 foot 11. Well, said the nurse looks like you've shrunk. Onwards to the scan where after 5 attempts,being yanked about in every direction ( I have RA, gently please!!) and being accused of being squinty I was done.

Yesterday I was in another hospital to have my first rituximab infusion. I was so anxious( up to 99 as my lovely mum would say!) but everything went fine. Had been told to pack an overnight bag as I'm prone to bad reactions but after taking it very slow I got home at about 10 last night. I was so well looked after, everyone was lovely & made me feel safe. Bit wiped out today but fingers crossed this is the drug for me.

So, only Wednesday but I've shrunk, I'm squinty & I'm very relieved to have the first infusion over with! Time for tea, cake and a big old rest.

Love & hugs to all xxxx

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pennylane
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24 Replies
Fidget02 profile image
Fidget02

So pleased everyone looked after you.

Wish I would shrink sidewards not height, I am only 5 ft 3!

Keeping everything crossed the new drug works

xx

pennylane profile image
pennylane in reply to Fidget02

Thank you! Im sure you are lovely as you are xxx

lbtabby profile image
lbtabby

What a time you have had, onwards and upwards x x

pennylane profile image
pennylane in reply to lbtabby

Always the same, nothing for weeks then everything happens at once. Absolutely onwards & upwards! xxx

Tillytop profile image
Tillytop

Hello,

I feel exhausted just reading about what you have done so far this week! So pleased your first Ritux infusion went well and I really hope it helps you as much as it has me. The "wiped out" feeling afterwards is familiar to me too but I was warned about this and I have had no side effects other than that so far.

Enjoy your tea, cake and well deserved rest!

Tillyx

pennylane profile image
pennylane in reply to Tillytop

Hi Tilly,

So glad to hear the infusion has helped you & without side effects. It gives me great hope! I'm feeling ok today just really tired, so hopefully this will agree with me. I think all the anxiety in the lead up takes it out of you too.

Hope you are having a good day. Take care xxx

sylvi profile image
sylvi

You are a busy bee aren't you. I hope you had a huge bit of cake for being a good girl.xx

pennylane profile image
pennylane in reply to sylvi

I am Sylvi & don't my joints know it today! All for the greater good though. I'm snuggling up with a cuppa & a slice of banana loaf this avo. Hope things are a bit better for you today. Sending hugs xxx

allanah profile image
allanah

Great and I hope they spoiled you a lot xx

pennylane profile image
pennylane in reply to allanah

Everybody was great. Thanks again for all the info Allanah. Take care xxx

allanah profile image
allanah in reply to pennylane

Oh good was it just about the same as I had done, or hope you experience was even better?!

pennylane profile image
pennylane in reply to allanah

Yes, just as you had described. My rheumatologist popped in twice to make sure i was ok. could have stayed over if I had felt unwell. Just took it really slowly, waited an hour after the infusion and came home to my own comfy bed. Hopefully going to the outpatients clinic in 2 weeks for next one. Everyone so kind & knew what to expect thanks to you!

which city have you been trotting across for all those appointments.. think they treated like a piece of meat??

pennylane profile image
pennylane in reply to

I've been on a tour of Glasgow. The hospital I usually go to is ten minutes down the road so I'm really lucky but had to venture further away for the scan which wasn't so handy or nice.

allanah profile image
allanah in reply to pennylane

Aagh they are huge hospitals aren't they! I trained at the RAI in Paisley which stupidly is on the top of a huge hill!! Really bad when pregnant or have RA !!

allanah profile image
allanah in reply to pennylane

Aagh they are huge hospitals aren't they! I trained at the RAI in Paisley which stupidly is on the top of a huge hill!! Really bad when pregnant or have RA !!

pennylane profile image
pennylane in reply to allanah

You know it well then. Really huge with rubbish parking & quite a few plonked on great big hills! Shattered before you make it to the clinics! xx

mistymeana profile image
mistymeana

Oooo someone else with the dreaded shrinks! I've been a guinea pig for an arthritis research study since I was first diagnosed and during my 20 yr appointment they weighed and measured me as usual and found I'd shrunk by two inches. I was a bit concerned as know it will happen eventually but not expecting it for another couple of decades. GP wasn't concerned as said it was just time and tide (cheek!) but agreed to a densitometry scan. Felt a bit like I'd imagine a session with an osteopath would be. I've got a scoliosis in lumbar spine so nothings been nice and flat and in line since my teens. Poor girl had terrible trouble getting me flat enough to scan properly but managed to get me "good enough". Turns out I have osteopoenia (told you so GP!). Also physio ordered new xrays of spine and thinks I might need ortho referral (double told you so!). So I am shrunk and crooked. What a pair! x

pennylane profile image
pennylane in reply to mistymeana

Nice to know I'm not alone, we'll start a new trend! :) xx

Craw profile image
Craw

You had a busy time did'nt you.

Glad your infusion went well and it seems as if you were well looked after.

You must have been exhausted after that amount of time but glad to go home.

So you have shrunk and are squinty and I bet you are wondering how did that happen.

My last chest scan I was told one side of my diaphram is higher up than the other, then he said don't worry and I am thinking why did you tell me as ofcourse I will worry.

I am also from Glasgow and one week I had to go to the Glasgow Royal then Southern General.

Also had to go to Stobhill which is miles away from me.

Take care

Mary x

allanah profile image
allanah in reply to Craw

I have squinty eyebrows!! Yep makes having a fringe difficult Rofl xxxxxx must be cause I was born in the southern general !!

pennylane profile image
pennylane in reply to allanah

That's where I was Allanah! Maybe it's the hospital that's squinty! :) xx

pennylane profile image
pennylane in reply to Craw

Thank you! It was a long day & I was very glad to get home. I love how those off the cuff remarks are always followed by don't worry. Aaahhhh!!

Sounds like you've been doing the grand tour of Glasgow too. We certainly get around!

Take care xx

allanah profile image
allanah in reply to pennylane

Xx

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