Thank you for all the responses: I didn't mean to upset... - NRAS

NRAS

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Thank you for all the responses

alwayshome
alwayshome

I didn't mean to upset anyone. Yes I am from the US. This term, end stage, is new to me also. I have one of the best and well known RA docs.

He as everyone else can or will not give precise enough explanation (for me) of what is coming. (I want to know worst case - best case) All ra patients are different. This is the common response. Which I already know this.

Joint replacement for sure. I am 57 and had a C3 to T1 cervical laminectomy and fusion this past February. My recovery is still in progress, but I am happy with the results. Better range of motion no headaches no other negative symptoms.

October 10th was a 1 year anniversary of being breast cancer free. Hurray for me!

2010 I had my right rotator cuff repaired.

How many joints can you have replaced. Who was the actress, Lindsey Wagner, the bionic woman?

Excuse the attitude I am feeling a little negative. The sun is out so I will go enjoy the day. Thank you all for listening.

10 Replies

I don’t think you upset anyone alwayshome. It is impossible for doctors to tell you how your disease will progress or not. I know that’s not a help but it’s the nature of the disease. Try not to dwell on what may happen and concentrate on getting well now. I’m sorry you’re feeling a bit negative, your 1year anniversary of being breast cancer free is something to feel good about, I’m very pleased for you 😊 Keep coming here for support whenever you need to 🤗

Hi,

Just to reassure you that I wasn’t upset... it was a new term to me also in relation to RA and I didn’t respond as I’d nothing useful to offer.

Though I confess that your mention of sunshine in this thread has niggled me somewhat as we’ve had rain after rain for weeks - any way of slipping a ray or two across the Atlantic 😎

I hope you’ve had a good day ☀️

All the best

Ali

alwayshome
alwayshome in reply to Ali_H

Hello Ali_H,

I've been reading through all the responses and I have to say hearing from others really helps. I beamed you thoughts of sunshine....hope they arrive shortly. May I ask about niggled? I'm from California and not familiar with that word? Hoping it to be a positive.

Our rainy season is about to begin. Love the rain and fire in the fireplace.

Ali_H
Ali_H in reply to alwayshome

Hi,

It’s sunny today so thanks for the sun beams ☀️😎

Niggled means to be slightly irritated - I was joking so please don’t be upset - I know when we are struggling a little joke can be easily misunderstood.

All the best

Ali (currently sat in the sunroom listening to the radio 😊)

Hi, glad you have sunshine to cheer you.

There is no way of knowing how any one RD patient will progress or how their disease will affect them. It is so very frustrating, we don't know. All we can do is fight every step of the way and find drugs, diets, exercise etc that works for us and gives us the optimum relief. It's definitely a take one day at a time kind of thing.

I hope you find the best path for you.

Sorry you are feeling low but try not to dwell on negatives of the future. I was diagnosed 25yrs ago and have had multiple joint replacements all successful, 2knees 2 hips rt shoulder and rt hand knuckles. Since being on retuximab infusions 6 yrs ago my health has improved and the extreme fatigue is under control. Try not to worry with the right meds it can be controlled and life can be enjoyed.

Take care and enjoy the sunshine xx

alwayshome
alwayshome in reply to Pulfs

Wow! That is a lot of surgeries! All successful, you are blessed. Yes, I also received rituxin infusions. That's when I started feeling better and flares pretty much stopped. Which surgery did you start with?

Pulfs
Pulfs in reply to alwayshome

RA started in my wrists and very 1st surgery was a left wrist fusion which relieved the pain. Wish retuximab had been around all those years ago and then maybe not so many surgeries would have been needed.

Hope your current meds keep working for you . Take care xx

Perhaps have a look at the story of Ailsa who started the NRAS - she's definitely a bionic woman! When I look at her journey with Rheumatoid Disease, I can only feel that I have been very lucky -although I often don't feel it when there is yet another thing that I can't do any more - but I have to remember that I would probably be having to say that anyway as I age.

alwayshome
alwayshome in reply to oldtimer

Thank you for your kind words. I will look in to Alisa"s story. All of us going through our journeys deserve gold stars. This disease changes a person not only physically but mentally. I would not wish this on anyone. Take care have to sign out cannot sit too long between my RA and neck surgery.