Worsening RA- 24 y/o with aspirations, what next?

[Amb098]

Hello, all

I have had Rheumatoid Arthritis since I was 18 months old (formerly was JRA). I have been on everything under the sun, methotrexate, Enbrel, Orencia, Humira, prednisone and now Cimzia.

I am a CNA and have been in healthcare for 5+ years. My goal is to start an LPN program full-time next fall. My boyfriend and I are starting to save for a house. I have plans and dreams.

I am in excruciating pain after work, unable to function around the house and get tasks done (I am in a very heavy skilled care facility, avg. 12-14k steps in a shift). Sleep resets me enough for 8 hours at the job, then it’s back to inflammation, stiffness and pain. My flare-ups are more unexpected and within the past year I’ve been having severe rashes with it.

I just started a new job two months ago and it pays so well, but it’s so intense it exacerbates my RA symptoms. The problem is I’ve had to call off twice for my RA so far, and it doesn’t seem to look good for me realistically to continue.

I want to keep my job so bad because I can save for a house faster and go to school without working as much. I need to stay at a job for a year to be on a mortgage application with my boyfriend.

I am tired of the pain and trying to keep up with everyone else like I’m normal, young adult. I’m tired of people questioning me and doubting the validity of my disability and its symptoms. I am also frustrated with the lack of job security for those that struggle with a disability. I don’t know what to do at this point. I’m tied between suffering a low quality of life to achieve my dreams, or I slow it down, end up in a lower paying job and push everything off. This sucks man.

[wilbertjellyfish]

It's crap. I fully understand. I'm very grateful I didn't get this until my 40's and often think about young people. I'm constantly thinking should I give up work but I'm self employed with staff so it wouldn't just be me out of a job.Your doing great managing to go to work and never forget that.

Sorry I've no solutions but there are new treatments all the time so hang in there. I've given up trying to explain to people also, TBH I just tell them I'm ok. If too frustrating trying to answer questions. Your real friends know.

Hope your having some time off over the holidays. Good luck

[Tealblue2]

oh I’m so sorry to read this. Your pain is so evident. And it’s an awful feeling. You sound how I felt 6 months ago and although I’m 44 and so much further into life than you I completely understand where you are coming from. I got out of a very nasty marriage put all my training into getting a good job and being a solo parent and it all fell apart because of RA. I was so scared and sad and financial worries made it worse. It felt like such a waste of training, knowledge and life if I’m honest

6 months later I’m on different meds that are working better. I’m in less pain and starting to see some of the old me. I’m working a part time in a rubbish job that I really don’t like. But it’s active to keep me moving. I’ve applied for some benefits (because I can’t afford not too and have swollen my pride). But on the positive side it allows me to pace myself. I have a day off a week to rest and I can rest in the evenings. So I do more than I used to do, I just do it slower.

I’m not saying it’s great, as I very rarely socialise. But it works. And most importantly it gives me the time and energy to be a good parent which I so desperately wanted and needed to do.

I guess the moral of the story is there is an answer, it just may not be what you want it to be. It takes some comprise and some heartache (accepting that I’d never be like anyone else my age was hard to accept) but you can make it work for you and you deserve that.

I wish you every luck x

[Mark72]

That's tough. Don't feel guilty the doubters of your condition are ignorant. Are you in a union? You have rights with a disability maybe you can reduce your hours or get extra breaks rather than dropping to a lower payed job.Your health is the most important thing it will derail your future plans more than anything else if you don't look after yourself.

Best of luck.

[ruth_p]

I completely understand what you’re going through, I’ve had JIA since I was 14. In 2015 I had just started a teaching job at a new school and I had the biggest flare. The humira had completely stopped working and there was no way I could work with my reception class and had to be signed off. My new head teacher was so good and really understanding. Have you spoken with your new employer or asked to speak with occupational health? My rheumatologist changed me from humira to tocilizumab which has worked so well for me since. This didn’t happen overnight however and it does take time. I work full time with my crazy, exhausting and hilarious reception class. So don’t give up on your dream job or mortgage and try to get some support from your employer and rheumatologist. 🙂

[Wafflefan]

Feeling for you, Amb098, I hope you're boyfriend is understanding and supportive of you.

It's a tough one, when you're feeling like you are and, the pressure of not wanting to delay any plans you have. Try not to put this pressure on yourself as for me it was a vicious cycle. 🫂 It's hard to do in practice, believe me I've learnt the hard way. You can get your mind to push through but unfortunately for me, my body shouted at me and the only option was to stop and make sure I took the time to feel better. Depending on how long you've been on Cimzia, hopefully it'll start helping you and doing it's thing . Sending you virtual hugs 🤗

[Artemise]

Hi - it is a tough road and am sorry to hear it's being especially challenging at the moment. I was diagnosed at eleven/twelve and am now in my seventies and while it definitely would NOT be what I would have chosen, as I reflect I see how many positives there have been and continue to be along the way, mostly to do with people and friendships and experiences that it and these encounters have brought. Try not to fret (easier said than done I know) and take care to surround yourself with those who will support you in the ways we all need. I hope you have good RA care too. Wishing you all the very best.

[GinnyE]

If I was your Mum I'd want you to pack in a job that left you in excruciating pain; to pace yourself, give the new meds time and then maybe try again. You're rushing and pushing yourself and, if I was your Mum, I wouldn't be able to stand the idea of you being in pain and exhausted. I'm not your Mum, but I'm still upset to think of you being in this situation.

[stbernhard]

Good lord you have it tough. Do you know your rights as an employee with RA. Your employer has quite a few responsibilities and are not allowed to hold your condition against you. I can't give you direct advice, but you may find help on the NRAS website. Well worth a look. All the best and a good festive time.

[virtualreality]

So sorry to hear how hard things are at the moment. You're right and your frustrations are completely and utterly valid - the problems caused by JRA / RA for work and life plans suck.

One thing I want to say is - and it might not feel this way right now I know - but I think you are doing amazingly. You're working a physically demanding job, have created opportunities for yourself to develop a career in healthcare, and have got yourself into the position of planning towards purchasing a home with your partner. Personally, I don't know too many 24-year-olds who are where you are in life. You might be further ahead of the game than you think. And, you've been living with inflammatory arthritis the whole time. With that kind of determination, I reckon the chances of making your dreams happen are pretty high.

That said, it's clear you're going through a difficult period with your health and the additional demands of your new job aren't helping. The rashes and increase in flare-ups may suggest a medication review would be of value. Would there be any possibility of temporarily adjusting your duties or decreasing your hours while you get through this? Could there be a way to slightly adjust the timeline for your further education and the house purchase if needed, to give you a little bit of breathing space just now? Is there anything perhaps your boyfriend could help with, to take a bit of the load from you for a little while? Nursing is hard work at the best of times, let alone with active inflammation.

I hear you on the lack of understanding and job security. It's hard and it is infuriating at times. People who don't want to understand, won't. Save your precious energy for what matters to you most. Those that are willing to listen and learn about what you're dealing with, they're the gems. Sending the very best of wishes your way.

[Rosie-NRAS Partner NRAS]

Good morning Amb098, We are sorry to hear that you are having a tough time at the moment. As suggested in a couple of the comments it may be beneficial to speak to your line manager to see if there are any reasonable adjustments that could be made within your role to make day to day work more accommodating to your RA. Your line manager may be able to organise an occupational health assessment that could be really helpful for you. Our Helpline closes at 1230pm this afternoon, but you are welcome to call us prior to then, or when we reopen on the 2nd January if you need to talk. We are here to support. Our work - related booklets may be of particular interest to you, alongside some of our additional booklets that offer tips and tricks on self management of RA. These booklets are free to download, and can be downloaded via the following link: nras.org.uk/shop/

Our freephone Helpline number is 0800 298 7650.

Again, we are sorry to hear of your situation, but you are not alone as you navigate this. Wishing you a restful and healthy Christmas. Kind regards, Rosie @NRAS