My Journey

[slatch]

Hello everyone my name is Andy, I hope this is OK it’s my first ever blog and I am new to the site.

Firstly I would like to say how marvellous the site is, and how supportive everyone is. (We are not alone, no matter how much it seems we are!)

It all began in September 2008 for me, I went to the doctors for something routine and mentioned the soreness and swelling in my hands and she sent me for some blood tests. Routine I thought, nothing to worry about, then I got a phone call from my GP wanting to see me straight away, wouldn’t say why, but I had to go now. Frightened is an under statement (especially being a man)

I went to the surgery to be told my Rheumatoid count was 200 and normal is 20, and I had RA. No, not me I thought, I am only 47, only old people get that. I was referred to the Rheumatologist at Pontefract Hospital and it was confirmed. Then the regime of toxins, steroid injections and regular blood tests began.

I started on Sulphasalazine but it made me ill so I was put on MXT tablets, 20mg weekly, Plaquenil, Diclofenac and Folic acid. I put up with the nausea for 4 days of every week until October last year when I was changed to MXT injections at 25mg and the Plaquenil was doubled to 2 tablets daily, and Diclofenac 3 times a day. I still get the nausea but not as bad, but suffer awful indigestion and the RA is now affecting my shoulders, elbows, wrists and hands and feet. Consultant is thinking about biologics now.

I was also made redundant in November 2008 so what a year that was. I was a senior manager in Transport and Logistics but can’t get a similar role. You only have to mention the dreaded RA and all of a sudden you are not suitable for the post. I have been working for my self, but have been off now for 3 months due to a “flare up”, and I am just so tired all the time, I couldn’t do a full time job any more.

I really struggle accepting that I have this illness, and get so down and feel so lonely, if it were not for my wife and family I don’t know what I would do.

I don’t mean to whinge, and sorry if I have bored you, but it is good to write this down.

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Hi Andy

Thanks for sharing and just a quickie - I'm based in Harrogate and also had awful indigestion problems with the Diclofenac. I complained about this a lot and the rheumatologist changed me on to Etoricoxib which i have found much better digestion-wise and hence better in myself. The treatment regime is for another day!

All the best Lindsay (alias Skippy!)

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Hi Andy,

You've not bored us at all, and as you say writing things down is really useful, not only for yourself, expressing how not only the physical effects of RA might have on you but also the effects on your mental health too. We can often feel alone and isolated especially when our mobility is affecting our ability to get out and about.

Another thing in your post that struck a cord was the employment side of things, I too have found that as soon as you mention RA you suddenly become unsuitable for a job, with the government plans to get people with long term conditions back into work, this seems to be an area they have overlooked, in many cases a potential employer won't risk taking someone on with a long term condition as it may be unknown territory for them.

Keep posting Andy,

Jo.

[Hidden]

Hi Andy lovely to hear from you. It's good you have found this site. No-one thinks it's a bad idea. You can moan and say what you want because we all understand being in the same boat.... hopefully not the Titanic! You have a familiar story to tell about employment and the Governments idea now to get as many long term sick people back to work is a worry. My brother has Parkinsons Disease, has terrible trouble with his meds and awful hallucinations, can't sleep, has trouble walking and can no longer drive and has just been called in for assessment. He's worried sick his money will stop. He has worked hard all his life, paid into a pension and provided for his family, until he was 57 and developed this Parkinsons. His employer was the first one to chuck him on the dung heap. However,on a lighter note, hopefully you will get some support on here and it looks like it may be a great place to discuss other issues and start or really helping to campaign for changes. Here's power to our elbows...... ouch.

Take care everyone x Julie

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Hi Andy, thanks for being so honest about how RA has impacted your life. I can relate to so much of what you wrote about how it affects you phsyically, mentally and emotionally.

Look forward to reading your next post.

Ann

[Lorrayne]

Hi Andy, welcome, you have not bored us at all, you carry on blogging, this website is great and we all seem to get a great deal of comfort and inspiration from it, not to mention learn a lot more about this condition and the poisons we have to take. I understand how devasting this not being able to work full time is and how depressing it beomes.

[emandedmum]

That's what this site is for and why we're all here! Everyone is very friendly and supportive and you will find that you'll have lots in common with us all. If you post a blog that others relate to (ie this one) then responses will flood in very quickly.I do think I'm developong a bit of an addiction to it already, don't tell facebook will you Jo

[Hidden]

Hi Andy

Welcome to the site...best thing that has happenned to me since becoming poorly. This is the place to let it out and the responses,support and understanding come flooding in.

Do sympathise with the work issue I was being sacked when the union did a deal and got me half pay for an extra two months to take me upto early retirement at 60yrs. It was a good result in some respects because I get a pension, but on the other hand it left me feeling pretty useless, \i hate not being in control of my life.

It takes a long time but once you accept that RA is who you are and you let it follow rather than lead you, life gets easier.

take care keep blogging Sue x

[Hidden]

Hi Andy and welcome, I too am new to the site only writing my first blog this week but already I've found the support of everyone else comforting and it makes me realize I am not alone even though it often feels like it. People in the same situation understand you better than anyone else as they are going through the very same thing.

I've had RA for nearly 17yrs now and still find it hard just the other day writing my blog I started to cry just when I thought I had no more tears left.

I haven't worked in all that time either and its so difficult not only financially but also spending the time at home trying to find things to do that don't make you anymore exhausted than you already or doing things that doesn't aggravate your pain.

It is hard to come to terms with, but the more you can talk about it and get to understand your RA the better.

You will get there.

Just one more thing you can ask to take Folic acid every day, apart from your MTX day as this can sometimes help with the nausea that's what I do.

mand xx

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hi andy, lonely , frustated you clearly and rightly are, hope you get sorted, I feel the same if you want a chat ..... Alison

[sylvia]

hi andy first you did not bore anyone im sure, we all feel better after posting as we all in boat hope posting on here helpt keep posting hope you feel a bit better sylvia x

[Lizz]

Hi Andy, thanks for posting - I've just joined today and not quite sure what Im doing yet! Just wanted to say, I can really relate to your post, having taken a significant wage cut about a year ago, after leaving previous employment due to lack of empathy / understanding. After one of the most stressful years, I've now got two jobs and am much happier with much more understanding employers now.

Glad to hear you have supportive family Andy ~ such a bonus, I am very lucky with this too, hope things are improving for you, take care ~ Liz