Hi, it's the first time I have joined a community blog and I have been touched by the honesty and rawness of peoples comments.
I was diagnosed with RA in 2000 - how to celebrate the Millenium
It came on very suddenly, and I went from running half marathons to crawling up and down the stairs. How much does this disease hurt and exhaust you?
'Fortunately', it has mainly settled in my wrists - have had left one fused (great success) and am due for partial wrist replacement of right one next month (yikes).
So, I am still running and refuse to give up - I would be unbearable if I had to stop. I hate taking the drugs and take a low dose MTX to keep things bearable - my knees have started hurting though so will have to watch that.
Working is tough; lugging a laptop around is excruiating but I want to be judged as an equal at work so haven't told anyone - think they may notice when my wrist is in plaster for a month though...
So, a bit of a ramble, but maybe it will help me to finally accept that this thing isn't going to go away!
Happy rainy Bank Holiday to all.
Written by
cornflake
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No cornflake it won't go away. I think we all don't want to accept as it means we give in.
Today is a pity party day as i feel rough after a fall. I only hope it settles down soon. It didn't help that i had a fall on saturday.
sylvi.xx
I think you have done remarkably well to keep it hidden from people at work for so long. As you say though, being in plaster might just give them a hint that something is wrong.
It is hard to accept that this RA will never go away. My husband has Parkinsons and me with the RA, we are a right pair. Luckily at the moment, I have minimal pain, I am on MTX 20mg. I just seem to get very tired but then I think thats all part of it.
Its quite a nice day here, sun is shining at the moment.
Enjoy whats left of the holiday weekend.
Mary
Not raining where I am Cornflake - lovely evening sunshine! Yes I think its time to accept RA really - it's not that you should stop running but the bit about not telling people you work with bothers me. Why do you worry about being judged so much - is it a very competitive back stabbing environment you work in I wonder? I don't know about this because I'm self employed but I think if it were me I'd find it hard to spend so much time having to keep up an act - would just want to be me. But then I like to educate people about our condition where I can but know that many on here have big battles with the work place. But if you don't tell them how can they know or have a chance to show you kindness and respect? TTx
I think you've done well to carry on for so long! But agree its the cutting back on things thats hardest, i was a hairdresser but had to give that up as my RA is mainly in my hands and wrists, i also used to own my own horses and compete endurance riding sometimes covering up to 50km in just a few hours but now resort to riding a friends sensible cob for no more than an hour when i can. I was self employed as a hairdresser so having to tell my boss wasnt an option but my work collegues were not very understanding, but then again the hairdressing world can be very clicky place... I do think its best they know though, they might buy you a lighter smaller laptop!!
Hi there, you do sound as if you might have reached a turning point if you say on one hand that you hate taking the drugs so are staying on v low doses, but also that you don't want to give anything up or tell people. What would you say to your best friend if she said something similar to you?
I'm not sure I'm there yet, as only had this for a few years - and I do still have the days when I'm sure it's just a big mistake. But most of the time I have accepted that this is now part of my life, and that's helped as I no longer fuss about little stuff. It's helped me focus on what's most important to me, and lugging a laptop around is not one of them. Tel your work & get them to get you an iPad instead! Polly
Hi Deeb1764Well firstly thank you for not realising my post was 10 years old (where did those years go?!).
It was amazing and actually quite emotional to read back through my post and all the replies.
It still hasn’t gone away though, lol!
But, I have finally accepted it and ‘came out’ at work (only) last year. I now have 2 fused wrists and 1 fused thumb and have had 21 operations in the process.
BUT- I am still running, hiking, working full time and on Humira which is much better tolerated (for me) than Metho.
I even now lead my works People with Disabilities employee resource group and am a volunteer for NRAS.
So hopefully I can give a bit back and help others be more transparent and brave than I was in sharing in the workplace.
Hope everyone is doing as well as they can and take care x
Oh wow that is amazing 21 ops and still running! I have started working again after 2 years off and though it’s hard as hell thro the fatigue and pain my brain was loving it to be part of a work life again.
It’s slow progress but I am going to keep on pushing!
I have said wow a lot in my head as writing this!
Or as our North American friends would say AWESOME 😎
I got the news on 3rd of feb that i had high levels of rheumatoid in my blood and i would need to see a rheumatologist. the first people i told after my family was my work colleagues. we have worked for over 20 years together, shared everything and they have been very supportive of me through this time. i feel you need all the support you get from as many areas in your life as you can. The school gives me as much time as i need for appointments and blood tests but its nice to return and be able to talk to them about it.
Cornflake, WE all sympathise with you! I detest taking the drugs too and with a wrist fusion and replacement joint now ' under my belt' so to speak, I have to accept that after 15 years my RA is not going anywhere without me! So we make each other comfortable and I couldn't do this without the understanding and help of my family, friends and work colleagues. They all support me when I need it and don't fuss about when I'm 'fine'. I agree with abannister above and have a similar experience with work. It'll be a load of your mind when you are not hiding anymore.
Best of luck to you x
PS I'm new on here too and haven't written my saga yet!
Hi Cornflake,
I so understand how you feel. I was diagnosed with JIA at 10 years old, and am now 60, but can' t believe it. I worked and hid my arthritis through my twenties and thirties, and no one except close friends and family ever knew. I am still in denial thirty years on, except it's a little harder to hide it these days. I have had a lot of joint deterioration, but in my youth, I was a keen ballet student and gymnast. I have always preferred to keep arthritis under my cloak, as otherwise it becomes the only talking point. With all the new drugs and techniques available today, I think you have a really good chance of getting to grips with this rotten disease, keep your weight down if poss and try and stay happy.
I think you have a really good chance of beating the RA blues. My very best wishes for the future.
I feel very much like you do...I hate taking drugs...I hate telling people close to me...I am taking Humira injections every fortnight...I am still running half marathons and am due to run Edinburgh marathon in 3 weeks...My consultant tells me all the time I am in denial...and part of me still believes I do not have RA...Like you I get most pain in my wrists...pain in my hamstring muscles, pain in shoulders...and bouts of horrible fatigue...but I will keep going until it is physically impossible...
Hello Cornflake, well done for keeping going and doing everything possible to put the ra in its place. My main problem is my knees and it effects my mobility so i can't keep it hidden but i would rarely use ra as a reason to be off work - although at the time of diagnosis i did - I don't want work colleagues to think that it has any major impact on my life although it obviously does.
Its a hard one because i find that i get understanding and sympathy from people, family, friends and work until I am unable to carry out something that i would normally do, then the tolerance in others becomes strained, it could be my guilt but i do see exasperation in others. Don't know if that makes sense or not.
Forgot to say, if you feel like telling, what was your wrist fusion like? How long til you felt you could use it etc. This is my tenth day with it, stitches out later, it's so frustrating using only one hand.
Hi T, bear with the frustration, it will be worth it. It is hard for those first few weeks as it is a major trauma for your body to cope with and for you to adjust doing things (especially the simple things we took for granted). Everyone is different, but I got out walking at every opportuniy to keep me strong - and made sure I kept my fingers moving and got the rotation movement back. I don't even notice it is fused now, apart from the rather impressive scar!
I now have to have my other (right) wrist done - and whilst the fusion was good for my left hand, I can't have 2 fused wrists and I am right-handed. So am having a partial wrist replacement - so recovery from that will be fun to
I hope you begin to feel better soon - I get no pain in my fused wrist so let's hope you will also feel it is worth it once you have recovered.
Hi cornflake. It's very interesting to read your post as I too am affected mostly in my wrists. Although diagnosed 45 years ago (now 48). Most of my body has taken a hit over time. Also like You, never divulged the information until these last three years, as like you stated, did not want my work colleagues to perceive me in a different way. However, again like yourself, my job is also office based and spend much of my time either writing or typing. My left wrist had a partial fusion and I was being considered for a full joint replacement in my right wrist. However, my consultant declared my wrist too far gone and that he had fallen out of love with wrist replacements as they have a high failure rate with people considered young. (Haha me!) He emphasised that younger patients put more demand onto the joints, which in turn caused damage. I was devastated as my wrists are both hideous. But I refuse to give up. Under duress he is asking other colleagues if they have any suggestions. I feel that I'm next to having no options as he's one of the top hand surgeons. Will look abroad if I have to, so welcome any research ideas if you have any.
Good luck with everything. I'm sure you'll be fab.
Hi. There is so much support here. I have learned, that I am not alone and do not have to pretend I feel fine, like I do in the outside world. It has given me strength. People here have so much courage and do not want to give up. keep coming back. God bless you.
I’m actually quite shocked to hear that you are at the point of having a wrist replacement, you look quite young. With the meds today you shouldn’t have to be in that position unless you really couldn’t find a drug that worked. I’m sure if you found a biologic that worked for you that you could still run, infact the aim of a good med is to make sure you don’t end up losing the use of your limbs. Methotrexate is only first base( as far as ra drugs are concerned) and it’s clearly not working. I’d say change your rheumatologist…..I left my first two to finally find a doctor who helped me…took a few years to get on the right drug , but absolutely worth it…. ( I’m on a JAK inhibitor for psoriatic arthritis)
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