sorry...but this is a rant :( losing it

peridotlouise

I am so fed up, and i know i've only been diagnosed since December, but I want this gone. I have got a new job in another department at work which I'm happy about, I beat 40 people for the role. And my manager has said that i should tell my new manager I have RA. I don't want to tell my manager, I don't know her and I'm worried how she is going to react, i don't want her looking at me differently and regretting hiring me and thinking I'm a liability or something. I just want to go to my appointments and blood tests without having to say that I am. I cant believe that now I feel I have to explain myself everytime i get a new job. My present manager is very good with it, as she was there when I had to go to hospital and was there for me the whole time I was going through a diagnosis, so it felt a natural thing when she found out. I'm sick with worry. I'm 24 years old, and all I keep thinking is I'd rather be dead than think about what my body is going to be when I'm even just 34 when Im still young (no i wont kill myself, but i hate having these thoughts). I haven't started my life, I am scared that I will be in a wheelchair. I'm sorry to those who are, but I feel I would handle this better if I was 40. I am single, who is going to go out with me now.
I have had to stop the mtx as i'm short of breath and have a cough and my rheumy wants me to have a chest x ray.
I don't tell anyone who isn't very close that I have RA. But when i do tell people no one understands me. My family don't listen, they keep telling me that I'm fine and that nothing bad will happen but that annoys me more, because i want them to realise what I have is not nothing. I am the only one in my whole family that wants a career and work full time and do something properly with myself, and I have this. I wanted to work abroad for a few years, i can't do that anymore as I have to think about the stupid hospital. I feel my dreams are shattered.

I am so sorry to anyone reading and thinking i'm pathetic. I just want to hide and cry all the time. I want to feel free. I just feel trapped.

barbara12

Hi peridotlouise
Oh my love you rant away, just taking to us lots that understand some of what you are going through...will hopefully help.
Its is very scary when you are first diagnosed, but believe me life isnt all bad with Arthur.
I can understand you not wanting your boss to know, but you may be surprised at her reaction, hopefully there will be help on hand when you do need it,
I just wish I could help more, but I am always here to listen,
You take care (((((()))) xx

applerose

Peridotlouise, I'm so sorry you feel this way. I'm sure most of us, if not all of us, feel like that at some time so please rant away. Hopefully, that will help you to feel better. You new boss might surprise you with her attitude and it would be easier for you if she knows when you don't feel too good. Good luck in your new job. (((hug)))

ruby2

Hi PD
I know how you are feeling and you have your rant ..it can make you feel better.
I was 27 with a new baby and 5 year old boy.
Not sure what your diagnosis is, but for me it was slow progressing and only 3-4 years ago did I drop my hours and change job.

Until 3 or 4 years ago I had a physical and challenging job for 37 hours per week.

I told my employers but they logged it and that was it.. some may do a risk assessment.
Telling them is really just a good insurance for you. It may be many years before you need to remind them, especially with the good medications available these days.
Take the meds offered and question them if they dont suit you in anyway.
Early intervention with these meds can make such a difference.
Dont fight the tiredness rest if you need to.

I had several years remission here and there, and now adays medication is not withdrawn completely but often you are left on a low /maintenance dose. I was not offered this in the early years but I can see how it would hopefully provide an even better outcome.

I hope you get some helpful information here on the forum. It is hard to take onboard at first.

Your new boss may have the same or even better outlook on it than your previous boss.

You have proved you are the one for the job beating 40 people (well done you), you sound like a fighter from your 'rant' so keep on fighting PD its a good attitude to have.

You will know who to tell friends wise and good friends will support you.

This is my opinion and how things have worked for me.
Good luck with it all PD.

applerose

Another thought - could your old boss talk to your new boss about it, if not now maybe if you need some support at a later date?

MrDJ

Hi Louise
just read some of your other posts just to catch up.
so how are you with the mtx so far. good i hope with no side effects.

all i can say is moan away as much as you want on here cos they are a great bunch of folks who will listen and give as much good advise as they can.
a lot of us have been in your situation at a young age and as ive said in other posts its like hitting a brick wall at 100mph when you are told the news.

even though we might have to change our lifestyle thanks to this condition try and stay positive. easier said than done sometimes but (somehow) ive still got my sence of humor and im not going to let this arthritis beat me.

it will take time to find the right pain management for you but the drugs now a days have come on leaps and bounds from the mid 80s when i was diagnosed.

ive got the full works, OA > ankyspon > RA and now PA as well (im gready)
i was diagnosed at 21 and was told bluntly not to plan ahead as i would be in a wheel chair within 6 months. they was almost right as i couldnt walk without crutches within 9 months.
27 years and many operations later im still in the same job of 31 years working in a xray department. yes ive had to change my lifestyle around quite a lot as there are so many things i just cant do now but thinking positive kept me going.
yes ive had a few bad days (actually really bad days) where you are so down but within a few hours the fighter in me comes out and i snap out of it and carry on.

i hardly use crutches since they found the right balance of treatment for me and ive just had my 70th infusion of infliximab. so give the docs time to work out whats best for you.

keep us updated on your new job and as i said theres someone always here to give support and advice.

another thing that might help is this letter i posted when i joined the forum a few months back.
i pinched it from another forum and whoever wrote this has helped quite a lot of people so far explaining to family and friends what they are actually going through. hope it helps > http://www.arthritiscare.org.uk/forums/young-people-s-forum-f10/an-open-letter-about-arthritis-t31110.html

good luck
Jim

valval

hi i am so sorry you have to cope with this at such a young age but remember that when you get the right meds life is so much better so hang in there. your family will never fully what ra does we live with it and can not always understand all it does. print some of the information off living with artheritis it might make your parents feel awfull that you have it and there is nothing they can do to help you but given time i am sure they will get there heads around it i am 51 and still get should you loose some weight why do you not exercise more etc i know she meens well and can not understand why some days i can not walk 50 yards then others can walk more than a mile.
all i can say is if you have not taken much time off work and you can do the job you have been given then you should let them know but how i am not sure good luck val

peridotlouise

Thankyou everyone for your replies and kind words, i'm trying very hard to not let this get me down. When I posted this I was having a very bad day. The thing that scares me the most is the future...so trying to live in the now...
My mum got very ill, and she got bad like ridiculously suddenly and got taken into hospital today which has been scary (not arthritis-related) Has been a very long day and she's going to be there for a few days at least. I'm so worried and it makes you realise that you need to appreciate the good days more.
I wish so much that I appreciated my health more before I got this. I used to moan about little things which I wish i didnt waste my time on.

applerose

Sorry you've got even more to worry about. I'm sure you're mum will be well looked after in the hospital. Hope she's up and about soon.

liesa

Hey PL
let it out on here as much as u need to... we understand better then those who dont have arfur,
i think writing the new manager a letter pointing out your best qualities and the reason they chose you for the job, yes maybe even get ur old manager to speak with the new one let them all know you will give it your best no one can ask more of you or anyone
hope ur mums soon on the mend xxx

freesia

Hi there...

I too was recently diagnosed - and was "SO" worried about telling my employers.. I am still trying to deal with the diagnosis myself and still in denial - let alone telling others and work...

But I "came out" this week and found my employer was OK with it.. I got very emotional and she saw that I was obviously upset... I don't want sympathy but just understanding of my abilities... I can basicly do about 95% of my current job (at the moment) but there are just a few tweaks needed here and there, but "fingers crossed" it will work out well...

I believe (not 100%) sure - maybe someone on the forum can let us know, but unless your employer knows your condition.. you are not fully covered by any discrimation claims which might arise...

It took me a while - but realised "for me" in the end - it's best to tell the truth...

Take your time and think about things, everyone is different and GOOD LUCK

PS... hope your feeling abit better with the world today.... and your Mum is getting better (hugs)

freesia x