Oh, you don't just have RA...

alarkra

Went to see The Man today. He wasn't there, but saw a great registrar and another consultant too.

My RA is slowly coming under control which is reflected in my bloods. Surprised me because I feel worse each day so did not think I was getting better... Unfortunately for me though, my pain is now actually predominantly being caused by fibromygelia (sp?). My body is telling me to slow down apparently. Which is a problem because I don't 'do' slow... I did that for the past 6 months and I want to be super busy again. Ugg. As if I didn't have enough wrong with me...

So, they are concerned that I am eligible for anti-TNFs, but only because the DAS score says so which is largely being influenced by my hurtyness for the fibroannoyingness... so they are not convinced that anti-TNFs are in fact the right way forward for me at the moment, especially as I'm STILL recovering from the flu (over a month now) and they are concerned that anti-TNFs will over-supress my immune system which could be catastrophic... *SCREAM*... :eek:

They have done x-rays on my hands and feet (** saw my feet today and not only are they deformed on the outside, they are hideous on the inside too!! Amazed and shocked at their hideousness!**) and I'm awaiting an appointment for ultrasound for that too. If they come back with some concern showing damage from the RA, then they will whisk me straight back in and will put me on anti-TNFs. However, assuming at the moment that this is NOT going to happen, they are going to give me injectable MTX as apparently it can be up to 20% more effective and reduce the nausea (something that I've been struggling with over the past couple of weeks, never before though) and so it may be enough to reset the balance.

In the meantime I have to slow down and not go nuts on my good days... so that's completely infuriating. I'm handing in my notice at work tomorrow. It's all very well being lucky with a part time good job, however, it's making me desperately unhappy and I fear that unhappy mind leads to unhappy health... so if I get shot of the job in a month, take some time to REST and look for that job which will make me happy (lots around at the moment which is good to know), then this may help me in the long run. I am fortunate enough to still live with my parents and I do have some savings so do not have to find a new job immediately (although I don't want more than a month off). Besides, a month to 'slow down' might be enough to tip the scales back to where I should be in non-hurtiness all over, which would be a bonus.

If I'm realistic, I'm still totally in denial about RA and the hideousness of it. I refuse to let it define me and rule me. The anger in me about me just fuels me to try and get this under control sooner rather than later. IT. WILL. NOT. WIN. :green

Many of you will disagree with this approach of ignoring it and carrying on for the most part, but my sanity needs this. I'm not ready to lay back and let arthur and fibro take over.

Love to you all. xx

tillytop

Oh Alarkra I am so sorry that things are so tough for you at the moment and that you now seem to have the Fibro to deal with as well.

But I think that you have taken a brave step in handing in your notice and that, giving yourself some time to "de-stress" can only be a good thing. Like you I am a firm believer that stress and unhappiness play a not insignificant part in general health and wellbeing and that you should take any opportunity you can to be happier. A few years ago I gave up a very stressful job working for a big pharma company and found a part-time job in a tea-room which I loved. (Unfortunately my health meant that I had to give that up but that's another story). What I am trying to say is that, although it was a big step, giving up my well-paid, full-time but very stressful job was the best thing I could have done and I have never looked back. I may not be in the best of health but stress-wise I am a different person and I am sure that has helped me to cope better with the health stuff. I hope that your month's notice passes quickly so you can have some much needed down-time.

Oh - and very good luck with the injected mtx. Hope it helps with the nausea.

Thinking of you.

Love Tilly xxx

caterina57

Hi, sorry to hear that you have this "hurtiness" and that you were shocked at the state of your feet but at least you have got your head screwed on the right way!
I abslolutely agree that its important to make sure that things are right - we only live once and my God does time fly by. Well done for being brave enough to hand in your notice and for having a plan to rest and then get back to it.
I wish you well, hope that the injectables work and that you don't experience nausea in the future.
Cath

traluvie

Hi Alarka...

Sounds like you going through the mill at the moment...
I agree with what Tilly's said... i think you have taken a very brave step in giving up your job and focusing on getting some rest.. hopefully some recovery time will make you feel better and you can rest when and if need be...
If you ever feel bored or lonely just log on here and i sure there will be someone for you to chat too..
Thinking of you.. you should be very proud of yourself for all you've been through so far and how you have been dealing with things...

dreamdaisy

Of course you are in denial - who isn't in the early stages? Having said that, how long has this been going on for you, and how soon were you given the meth? Is that the only thing you have been taking? The injected stuff is more 'powerful' than the tablets, which means you can have a smaller dose and, hopefully, avoid the nausea. Oh, I love the term 'fibroannoyingness'! That sums it up beautifully (I know one shouldn't laugh when another member is in full rant mode but that expression . . . . wonderful!)

RA is a destructive disease and it does thrive on stress. By all means leave your job - I think it involves a fair bit of communting, yes? - and then STOP. Sit and do nothing, as recommended, because your poor body is trying to tell you something. Listen to it: yes, I know, I know, it's not telling you what you want to hear but you do need to listen and to take its demands into account. I know that there is not much to be done for fibromyalgia - isn't exercise supposed to be beneficial (?) but that has to be tempered with periods of rest and recovery. There are numerous threads on fibromyalgia about on here and I am sure the helpline will have leaflet/s about it, ring them and garner some information.

This is a bitter blow, alarkra, no doubt about that. Take some time out, be kind to yourself, and don't make any rash decisions. Anger is a good thing but it is a strong, fierce emotion, stressful in its own way, and we all know what RA likes to fuel itself . . . . . DD

alarkra

Morning!

So I handed in my notice **yesterday and explained my hideous situation. My boss actually cried. Which in turn made me cry. But we pulled ourselves together. She didn't want me to leave because I'm so good at my job and great to have around (her words btw) and was really sad that I have been dealt yet ANOTHER blow. But I know it's the right thing to do. I'll sit down for a bit, then go and do something else awesome.

Tilly - How wonderful that you made that brave step to leave the well paid job to work at the tea room while you could. I too share the view that all the stress just isn't worth it and sometime crave a gentle job. :P

Cath - thanks for your supportive words.

Traluvie - I'm a tough cookie, I'm not going to let it bring me down. However, you are right about the forum, it's really helping me deal with all of this. 8)

DD - I was diagnosed in July 2010 when I was at my worst and put all on my meds straight away, including MTX in tablet form. It's going to take a couple of weeks to get the injectables sorted and then go to the hospital to be shown how to stab myself and then it all should be on it's merry way to getting sorted. I think the fibroannoyingness is purely a reaction from when I had flu and my body is still struggling to get back to 'normal' RA health... so we shall see what happens. Healthy mind, healthy body. Now I have quit my job and hopefully the healthy mind will follow... only time will tell. :???:

xx

tillytop

Hello Alarkra

Well done for "doing the deed" yesterday! In my experience it's not easy actually doing it, even once you have made up your mind but hopefully it's a relief now the deed is done. Hopefully the fact that your boss said nice things should give you a bit of a boost, knowing that your contribution really has been valued. As I said before, not once did I regret my decision to swap my stressful job for one I enjoyed and I so hope that once you have given yourself a bit of time, you too will find a job you enjoy.

Thinking of you.

Tilly xxx