What now!!!: So I got diagnosed with RA last September... - NRAS

NRAS

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What now!!!

Lauranorder profile image
26 Replies

So I got diagnosed with RA last September and that was followed by an array of infections. At the beginning of this journey I listened to all the advice and decided that, despite a rocky start, RA wouldn’t determine who I am. I was a tough cookie, I’d never been sickly and I was going to go on with a positive attitude. When I was 1st diagnosed it scared me that RA increased risk of heart attack and stroke. My dad had his 1st heart attack at 27 and died in his sleep of a heart attack at 61, so the outlook was even more concerning for me, but I was going to do okay. Now, despite being so determined I’m beginning to think September marked the end for me. Ive now found out I have angina. All the initial determination has gone. I feel angry and frustrated, but most of all I feel terrified. My daughter has just bought her first house and both of my sons got engaged last year. One is planning his wedding for Christmas 2020 and I’m desperate to someday be a nana....I love my life. But everything could end in a blink of an eye just like it did for my dad and there is nothing I can do to stop it. I can’t seem to muster the positive determination that I know I need. I just feel life can be very unfair 😥

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Lauranorder
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26 Replies

I know it is easy for someone else to say but keep on the positive ... keep looking forward to become a gran and living a long life. Do all the right things to stay in the best health you can and live your life. Don’t focus on what might happen .....😄❤️❤️

Lauranorder profile image
Lauranorder in reply to

Thank you ❤️

in reply to

Flowers 💐 🤗

Lauranorder profile image
Lauranorder in reply to

❤️

Doughnut61 profile image
Doughnut61

No one knows how long we have. Even without RA! So please please try and stay positive and enjoy each day. (Hopefully pain free ) 💕💕

Lauranorder profile image
Lauranorder in reply to Doughnut61

Thank you ❤️

Gnarli profile image
Gnarli

Well, you sound perfectly normal to me if it helps at all. I should think that many of us with inflammatory conditions have felt exactly as you do. I certainly have. Knowing of your Dad's shockingly early death could perhaps be the spur to make the very best you can of each day. To wring every last bit of enjoyment out of every moment. None of us know how long we have after all. Wishing you well

Lauranorder profile image
Lauranorder

Thank you ❤️

Hi Lauranorder, 🙋🏼‍♀️please don’t despair! as stress is not the best thing for RA. I can understand how your feeling but pleased don’t let it ruin what you have. You’ve soooo much to look forward too and it sounds like you have a wonderful family. Please don’t dwell on the past and what happened to your Dad, none of us know what’s round the corner, so pull that positive person out of the cupboard and live for the moment!! I was diagnosed with RA 22yrs ago and have a heart condition, but I’ve watched my 3 grandchildren grow up into adults and hopefully I’ll still be here to see some great grandchildren. Now go and get that hat 👒for the wedding 👰 🤵and enjoy life!!! 💐 🤗 X

Lauranorder profile image
Lauranorder

Thank you ❤️

sylvi profile image
sylvi

When the rheumy gets your drugs sorted out properly you will feel different not the same but different and i am sure your positive attitude will came back. Life is now different darling and it will never be like pre-RA,but your attitude to it will be bugger it i will not let the B"""""d beat me (meaning your spirit and positive attitude) A lot of people work with RA and get on quite well darling.xxxx

Lauranorder profile image
Lauranorder in reply to sylvi

Thank you ❤️

Thingybob profile image
Thingybob

If you are in the uk you can self refer to iapt for counselling about health worries. (If you google it it will give your local details) Or ask your rheumy about a refferal. It may be a long wait but it may help?

Lauranorder profile image
Lauranorder

Thank you, I’m thinking that might be a good idea ❤️

Nellie1965 profile image
Nellie1965

Hi Laura,so sorry to hear you are feeling low.Just to be expected.I have a similar frame of mind.I keep going through all the complaints and pain.I won’t sit down and give in.Angina,I know it’s scary,my mother had it,she was diagnosed after three attacks.She was a tough cookie,that’s where I learned it.😁she carried on working and died from cancer 12 years later,never had any more attacks after being put on meds.Please don’t let this beat you.Look after yourself as best you can and life will be good to you.Hugs and kisses.xx

Lauranorder profile image
Lauranorder in reply to Nellie1965

Thank you ❤️

MissMinto profile image
MissMinto

Hi Lauranorder (great name!)

I think what you're going through is a very natural stage of the grieving process.

Yes, a positive attitude is really helpful to keep you looking and moving ahead, but for me I almost turned it into an art form until I realised it was a coping mechanism, a form of denial if you like, to delay the shock of the diagnosis and give me time to come to terms with it and the possible implications of it. You've just been diagnosed with not one but two potentially life-changing illnesses - that IS unfair!. You wouldn't be human if you weren't having a wobble.

As others have pointed out, once your meds are sorted things will stabilise and the path ahead will be clearer. Also, though you may need to come to terms with some adjustments in your life to accommodate changes in energy/pain levels etc, these illnesses don't define you - you are still you, just with some added characteristics. As we all know, any one of us could get knocked down by a bus tomorrow - it is important to live in the moment and make the best of things, but I do think it's also ok to have the occasional (self) pity party when you're struggling, and be kind to yourself.

This is just a phase, and it will pass. X

Lauranorder profile image
Lauranorder in reply to MissMinto

Definitely having a pity party 😊

Thank you ❤️

janmary profile image
janmary

Remember that the treatment for angina is now completely different and successful. My brother had angina at 40 - he's now 74, walks miles every day. I know lots of other people with good outcomes from sugary or treatment.

See the right docs and try to feel positive - good that it's been diagnosed.

There are good heart helplines to talk things through.

Lauranorder profile image
Lauranorder in reply to janmary

This is very reassuring janmary

Thank you ❤️

Ann2020 profile image
Ann2020

After your diagnosis, were you immediately placed on prescription drugs to treat ra? If so, that’s the downside of those meds that turn down your immune system and make them the double edged sword that they are. Also, did you have swelling and redness in your joints, or were you just positive for ra, wo showing some of the worse symptoms? Hope that things turn around for you. I’m sure that they’ll work out, stay optimistic. Better to look at what’s good in your life, as you’re doing.

Lauranorder profile image
Lauranorder in reply to Ann2020

Hi Ann. I was put on methotrexate and yes, I did have swelling. Plus I didn’t know at the time but I’d had some bad flares and also dry eye syndrome and fatigue which I then found out were associated with RA.

I’m trying very hard to be positive but the latest angina diagnosis has really rocked me.

Thank you ❤️

sharon6768 profile image
sharon6768

I'm wondering if you are on methotrexate. I was without hope or joy when I was on it. I had therapy for months and the only result was that I cried a little less. I got so tired of dark thoughts that I demanded my rheumatologist put me on something else. Within 30 days I was back to my normal cranky self. (Just kidding about cranky). Everyone handles these meds differently and if you are feeling different since you started your medication, you might want to start there. Just my humble opinion. There is hope!

Lauranorder profile image
Lauranorder

Hmm It’s certainly something to consider. Thank you sharon6768 ❤️

vilistus profile image
vilistus

I have a heart problem, but not RA. When I was 26 I was told, don't worry, you'll reach 70. That's fine at 26 but I'm now 69... I mentioned this to the consultant at a check up meeting and he said that back in the 45 odd years ago that was about right but things have developed and 80 or 90 is now the new 70 if that makes sense. Things healthwise will have improved since your Dad died and they have so many new drugs/treatments now it's unbelievable. Look to that to inspire you - it might just help a bit! All the best JW

Lauranorder profile image
Lauranorder in reply to vilistus

Thank you thank you thank you, I think that’s just what I needed to hear x❤️

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