Light at the end of the tunne

Hello guys

Just wanted to post a 'feel good post '

Last year I was off work with shingles which meant I couldn't take my RA drugs .This resulted in my RA running rampant in my body.I ached all over and on some days couldn't even lift a cup of tea :-(

The clock was ticking work wise. Im a flight attendant which is a very physical job .Long hours different time zones .Family were saying that I ought to give it up :-(After 20 years of doing what I loved I wasn't ready to throw in the towel .Simponi wasn't having any affect

My rheumy suggested rituximab and leflunomide so last August I had my first infusion ( just had my second ) and it has got me back to almost the old me .

I'm so so grateful I'm now back in the skies flying to serve and all that jazz .

I guess what I'm trying to say is no matter where you are in your battle you will get there in the end .

Yes it can be frustrating and painful but what you are going through is a temporary thing .

With the right meds you can get back to being the old You !! Never thought I'd be able to say that last year :-)

Keep strong .....you'll get there ๐Ÿ˜˜.

26 Replies

oldest โ€ข newest
  • So wondetful to hear positive news. Well done you xxx

  • That's wonderful news, thx for sharing. I know people are often concerned about taking biologic's. I have found they have fewer side effects and the benefits, if you find one that suits you, are amazing. Long may it continue. X

  • Yes I was concerned too but I would have tried anything last year just to stop the pain :-)

  • Hiya Fiona, lovely to hear from you again, especially being such a positive post. I'm really pleased for you, I remember your dilemma when you first posted but you're proof positive once the right combination is found for your specific disease everything can be so much better, almost normal I'm sure you'd agree.

    So, thank you Fiona, by updating your current situation I'm sure it will give hope to many here who are newly diagnosed or struggling. x ๐Ÿ˜š

  • Thank you .

    I honestly thought I would have to give up work but here I am back flying :-)

  • ah so nice to reply :-) guess I just wanted to share that there is always hope .

    I had a crap year and was on the verge of giving up my job .But slowly slowly with restrictive roster and going part time in a couple of months I feel back to almost normal ...well my new normal :-)

    I still wake up with aches and have the occasional flare in my hands but nothing like it was when it wasn't under control .

    I've learnt that I have to pace myself and not burn the candle at both ends .

    My partying days are over to a certain extent , I rarely drink these days ....now I look forward to having an early night with my I pad and treating myself to massages when I'm away .

    Life is good

  • Hi Fifi2

    I'm so glad that you finally have some positive news,and to be back in your job in such a relatively short time(in our world at least) is fantastic. I'm hearing more and more positive things on here lately,and every time it brings a huge smile to my face,as it echoes what I've been saying too - it took me almost three years to finally find the correct drug combination,and you really can hit some low points along the way,but when my right combo finally clicked,it was literally like someone had taken a bag off my head,and I could finally see the light at the end of the tunnel again...... unfortunately someone rear ended my car in stationery traffic two weeks later,but that's just life,eh?! ๐Ÿ˜‚

    Ok,so my priorities/goals have changed to what they were before I was diagnosed,but there is still life to be had,it's just very unfortunate that for some,myself included,it can take longer than others. I've also been given inspiration in the hope that I can one day get back to my running too,as one fantastic lady on here a short while ago was posting about doing marathons again..., it took her a while to get there,but there is hope,and I hold onto that dearly,as I hope others do too(not the marathons,just the hope part๐Ÿ˜).

    Once again,you've truly put a huge smile on my face today,as I can almost hear the joy in your words when you're talking about getting back to something you love. Long may it,and your good health continue.

    All the very best

    Nicki x

  • Ah niki what a lovely thing to say :-) thank you .

    I just wanted to share that no matter how daunting it can be at times you just have to hang in there .

    I have a fantastic rheumy and nurse who have held me hand throughout .

    I had some really dark days last year . I couldn't drive and I was practically becoming housebound as it was too much effort to go out .

    I was off work for 11 months in total but have had this for about 3 years now .

    Have to admit In the beginning I felt a fraud as when I would read posts on here I was nowhere near that bad ! But when it hit , blimey it was like being hit by a steamroller .

    I just take one day at a time .due to the unpredictablity of this condition who knows what will happen but for now ......I'm good

    Thank you once again x

  • A very happy post and a boost to everyone on here that there can be light at the end off the tunnel good luck xxx

  • Thank you all for your response .

    This site really helped me in my dark days last year .

  • Lovely post and you might be on my next flight ? enjoy being you! xx

  • Ha ha that would depend where you are going and who with :-)

  • Into Barcelona back from Venice.lol I'm not defined by RA and take LEF too, it changed my life and put the RA into remission. So back in a swimsuit, and looking forward to the hols !!!

  • Yey ! Well done I think it's important to post positive posts also .....just to give others hope and that it's not al doom and gloom

    As for seeing you ...I only fly the long haul flights :-)

    Enjoy ๐Ÿ˜Š x

  • Hi Fifi2

    So good to hear such a positive post.I am very pleased for you

    At the moment I am one of those who is still looking for the right combination.It is proving quite challenging as I have a number of other conditions which are not helping.

    But at least by reading your post it gives me some teensy bit of hope that it could all change,and put a light at the end of the tunnel.

    I dont expect to go back to my old cycling 100 miles per week ,I would settle for just being able to walk across a room unaided.

    Take care and good luck.

    Crusee

    XX

  • Ah thank you crusee

    My goal is to get back on my bike this year too .

    It didn't even come out the shed last year !

    As soon as the weather picks up I'm going to try start cycling along the tow paths .

    100 miles per week ?? That's impressive wow .

    I'm going to start with a gentle 10 miles then work my way up ...fingers crossed

    I'll keep you posted ๐Ÿ˜˜

  • So wonderful to hear of a positive outcome. Long may it continue.

    Marie

  • Thank you Marie ...let's hope so :-)

  • Wow Fifi - I traveled in my work for almost 20 years - the last 8 from coast to coast every week, and man that IS a physical job. And stressful. The flight attendants are the first and last line of defense for the passengers and I for one was always very grateful to them. Of course, flying so much I usually got upgraded to first class so I pretty much saw everything they had to do, and a lot of jerks they had to deal with.

    Congratulations on getting back into the skies and doing so comfortably. That is impressive.

    I am so amazed that there are so many ways for us to get to remission (which is basically what you are experiencing I think?). Excellent work for you

  • So nice of you to understand the role of a flight attendant.It can be so demanding even when one is in top tip condition !

    I work with the best people .

    Hopefully I am in some sort of remission .....long may it continue.

    It's so good to have the old 'me ' back again .....she was sorely missed

    I would like to also thank the staff that man the helplines .i remember ringing up last year in tears and was so grateful for a sympathetic ear

    Bravo ๐Ÿ‘

  • Hello from Mexico!

    So pleased to hear this Fiona!

    See you on board soon, we can share RA battle stories.

    Love Mx

  • Hello fellow flyer :-)

    Yes hopefully we will fly together one day and have a drink down route !

    Off to Rio next week for some sun โ˜€๏ธ

    Hope your doing well xxx

  • Morning! Happy Mothers Day Mrs!

    My neighbour in the room next door has their telly blaring so that was my wake up call.

    I feel rancid and the morning walk to the loo was as agonising as ever! I must truly look 90 years old๐Ÿ˜‚

    I will perk up when the stiffness wears off and I stagger down to meet the gang for breakfast.

    Coincidently we have both been off 11 months , how strange is that?

    At least if the powers that be give us any grief from work we have each other's experiences to corroroborate how dreadful it is getting the drugs right and a semblance of control.

    Anyway, my blood tests last week were fantastic, my CRP was 2 and my ALT was 19 which means we can definitely have that drink when I see you.

    Usual bun fight between Health Care @ Home and the hospital to get my deliveries of Benepali but I have the most wonderful Rheumy nurse who takes no prisoners and absolutely no nonsense.

    I've been given all the epic routes lately I suppose for them to cash in on my low hours after sickness.

    Buenos Aires, Sรฃo Paulo and Haneda nearly wiped me out. I do tend to limp a bit through the terminals.

    Have a great Rio, I hope the crew are good.

    When I tell them about my condition as they see me popping pills all the time , the universal response is .........

    'You are young to have that' I'm afraid the knowledge out there is limited , mind you I did meet a duty CSD on the bus who's hubby is on Humira for his ankolysing Spondilitis . She totally got it.

    I never fly with my injections as it's just too much hassle worrying whether they have gone over the 25degs. The cool pack I was recommended to buy just didn't cut it with the length of duty days we do.

    I just adapt them and take them a day early or day late however my roster works.

    At least with your infusions you don't have the travel hassle though If you are anything like me the hospital appointments can be a right pain.

    Anyway my dear girl. I am over the moon chuffed you are feeling better. It is just fantastic news!

    Please take care out there and be kind to yourself, don't push it too hard and try and rest down route as much as you can.

    Will look forward so much to seeing you! Though it will probably be a blinking Delhi night stop or something!

    All the very best, love M x

  • Ah lovely words thank you x

    Yes I so get the misunderstanding of this .

    I had a girl tell me ' oh my friend has that ...she got it through too much running ๐Ÿ˜ณ๐Ÿ˜ณ๐Ÿ˜ณ

    I couldn't be bothered to explain I just smiled and said that's a shame .

    Someone else said just take hot baths with lavender oil ! Ha h aha ha

    If only it were that simple ...I wish

    I always have a hot bath after a flight it eases the stiffness in the morning and makes me sleep like a baby .

    Not sure how long I can do it for but I'm going to give it my best shot

    Take care missy

    Fiona x

  • Hi Fifi2,

    Great to hear such a positive post. May you remain well enough to keep doing the job you love for a very long time.

    Wish I could do a better job of pacing myself. It is so tempting to try to do too much when you move from a challenging patch into a better time. I just need to get better at listening to my body!!

    AARA

  • Ah thanks for that ....had a little set back and was off work 3 weeks ...totally exhausted

    My part time starts after this trip so I'm hoping I'll be able to manage this damm RA better !

    Onwards and upwards !

You may also like...