I feel so lucky: Why? because when I read some of the... - NRAS

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I feel so lucky

casapp profile image
8 Replies

Why? because when I read some of the blogs on here I think about my circumstance and think how things are better for me.

Some of you girls and boys have a terrible time with work issues, I am an ortho nurse and everyone at work is brilliant, I suppose because they understand the illness better than a lay person they know that I can struggle with some things and they all help me as much as possible, if I'm tired they let me take on the lighter work loads or let me sit in the office to catch p on paper work. Though we are really busy and heavy and I work hard the are always mindful of me. I have a fantastic rheumatology nursing team that are available on the phone for advise and who don't mind if I pop down to see them (and that goes for any of their patients), Appointments with the rheumies are few and far between as there are only 2 of them but they are really good as well. My Gp's are brilliant too. Many people on here talk about the psychological effect their diagnosis has had on them, I was relieved to have the diagnosis, i had suspected that I had it for a year or so, but I suppose because of my background it didn't scare me, I have worked with patients with severe RA and horrendous deformities (from the days when there was no effective treatments) and whilst I know there is a chance of deformity, it will never be like those poor souls, one of my patients from my very first ward Mrs E, was born in the early 1890's, and she had the most horrendous deformities but she was kind and patient and bore her infirmity with such courage, she had a horrid sinus going from her back right into her spine from her RA and infection, we packed it every day with a foot of ribbon gauze, I always think of her when I am feeling down and it makes me feel a bit braver, She was a real role model for me at the tome and even more so now!

Be brave all you RA warriors, cos warriors is the right word, I think of you all and prayer for us all every day

Carol xx

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casapp
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8 Replies
sylvi profile image
sylvi

Its nice to some positive news reguarding being looked after. You are very lucky to be in a place where your looked after so well. There are still good people out there and it encourages others.

Hope ypu continue to be able to work.

Sylvi. xx

helixhelix profile image
helixhelix

Yes it does make me feel lucky at times especially when I read about others' really awful problems. And, sounds dreadful to say, but sometimes when I'm feeling exhausted by it all it really helps to realise how much worse it could have been (still would have prefered not to get this tho'!).

Gina_K profile image
Gina_K

Carol,

Great to hear you are doing so well. In fact one of the first things my Consultant told me is that the change in treatments has been so vast for RA patients compared to when she started, where corridors in RA clinics were full of wheelchairs, she said this would'nt happen to me (hopefully),

I have bad days and am tired by times, but mostly am grateful for the treatment I have received. I am off work at present and am enjoying the space, but we are all at different stages, and a year can make a big difference.

I too was glad of diagnosis, as I thought I was dying, the fatigue & pain was weird and inexplicable.

Regards, Gina

Hi Carol - what a lovely blog - you've cheered me up thanks! Tilda x

you are truly blessed x

tiger profile image
tiger

When I was first diagnosed, I too remembered all the elderly RA patients that I had nursed over the years with their horrendous deformities and inadequate pain relief. I remember my very first rheumatology outpatient appt and I braced myself before stepping into the waiting room, I was filled with dread because I thought I would see a room filled with people with horrendous deformities and all in wheelchairs. I was relieved to be proved wrong and pleased to see that there had been advances, albeit not a cure. It is sad to say but the fact that there is always someone worse off than me keeps me on an even keel when I have my off days. Wendy x

Beth58 profile image
Beth58

Wonderful blog and thank you for the tale of the lady. It really does make us think about how lucky we are with the diagnostic tools and treatments available these days. xxx

cathie profile image
cathie

Yes I empathisise with this as my mother had ra in 1950s and was dispatched to the bath hospital for rheumatic diseases for a couple of months. She had bad deformities, wasn't particularly brave, but was always making plans for something nice to do x c

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