A surprisingly lovely trip to and from the docs!

Well, there was me worrying a little about my trip to the docs yesterday, and yet it turned out to be rather heavenly! The bus driver took it nice and easy on the twists and turns, and the weather was so absolutely beautiful (had freshly snowed and the sun was shining brightly) that it was such a treat to travel "high up" on the bus, as I could see for miles around the amazing views stretching into the distance. We travelled through gorgeous little villages with houses to die-for, and farms sprinkled here and there (definitely perfect pictures for xmas cards!) and I did curse myself several times for not having my camera with me - should have learnt that by now I should probably carry one with me at all times, as you never know when a picture opportunity might arise, and it does tend to be pretty often in this part of the world.

After the doctor, I had a truly lovely and peaceful walk in a park, with the snow sparking from the sun under my snow-booted feet. I was the only one there - bliss! The air was so pure, I felt sure it would do my lungs no harm, so I stayed there as long as I could just revelling in the stillness and the beauty of it all.

I truly wish I had photos to show you, but have decided to try and capture it another day. Love Ruth xxxx

I'm still here!

Hi lovely peeps,

I can't apologise enough for being terribly bad at updating my blog. I don't really know what to say about it, except sorry. I also hope that you are all as well and happy as you can be right now.

I don't really know where to start as I've had lots going on since I last posted including my 29th birthday, a visit to Paris, my aunty dying (v sad), flying to england for aunty's funeral, christmas and new year in england, and in between all that several tedious tests and hospital visits.

The greatest news healthwise so far though is that it's looking increasingly like I don't have lupus!! Not sure if I even had mentioned that the docs were suspecting lupus, but woooooo hooooo that it's looking like I don't have it! Definitely a major relief.

At the moment I'm trying to shake off a probable chest infection, and will take the long trip on the bus, down the twisty turny mountain road to the doctors later. Am praying that I won't a) be sick and b) faint as I hardly feel at my best right now, and I remember all too well the drive UP the mountain on saturday, and having to try and grab onto something when I got out of the car to stop myself collapsing :(

Anyway, I had better leave it there for now, as gotta get ready for the bus! Hopefully it won't be so long till I post again. Happy and Healthy New Year to you all! Ruth xx

Petition to stop NICE withdrawing important drug treatments for Crohn's for maintenance!

Hi there,

I'm first of all, really sorry I haven't been on here for a while. I've been really busy with stuff, but I know that is not really a good enough excuse not to keep you all posted! I will try to post properly soon, but in the meantime I wanted to ask you for your help.

I don't know if any of you have heard of NICE (National Institute of Clinical Excellence) in the UK, but they are proposing to withdraw two anti TNF treatments - Infliximab (Remicade) and Adalimumab (Humira) for maintenance use in Crohn's patients. This could affect me personally, as I'm currently being treated with Infliximab (Remicade) every 8 weeks, and to be quite frank, it is my lifeline, and I would not want to imagine a life without it. It would be truly devastating as I have tried all other treatments and they have all failed. I know there are many more people in the same boat as me too.

Now, there is a petition to sign (for UK residents and expats only unfortunately) to help stop this happening. I would be so very grateful if you could sign this (and get your friends and family to sign too) as there is strength in numbers. We need 200 plus signatures by 15th October, so not very long. I thank you so much in advance for your support - it is greatly appreciated.

So, here's the link: http://petitions.number10.gov.uk/crohnsTNF/

If you want to know any more information, there is a document on the NACC website (National Association for Crohn's and Colitis). Please visit: http://nacc.org.uk and click on the box which says "NICE Anti TNF therapy guidance".

Thank you so much again, best wishes to you all, Ruth x

Over one thing, got another, and a trip to the neurologist

Well, sorry about the last post. Hope it wasn't too depressing! Now thankfully I'm feeling better on the Crohn's-front, yay! but instead have been fighting a bad cough for several weeks. Think it could be an infection as I'm bringing up all sorts of yuck (sorry for TMI!), but I don't want end up on antibiotics as the last time I was on them I ended up back in hospital. So I'm trying to fight it on my own (with my poor immune system? yeah, right!). But I have fought this before on my own, so I'm sure I can do it again. Or at least that's what I keep telling myself!

Unfortunately I think I am fighting yet something else on top, as the last few days I've felt pretty rough. Don't know quite what is happening to me at the moment, but I don't very much like it. Maybe it's the strange weather we've been having here.

Anyway, this afternoon have got my neurologist appointment. Think I have mentioned it on my blog before, but in case I haven't, I have been having some mysterious symptoms and my GP thought it best to get checked out by a specialist. And so that appointment has finally arrived! yay. I'm going armed with my english to french translations which I have been working hard on, so wish me luck!

Hope all of you are as well as you can be. Take care, Ruth x

Crohn's bad

Unfortunately I am still far from well, as not only do I have the germ still, but now it's also affecting my Crohn's badly. It's all rather frustrating, and I'm getting pretty impatient now. Just want to be better now as it's no joke anymore. I guess the only good thing about it is the fact it has made me appreciate just how well I was feeling most of the time, before I caught this latest germ, compared to the years of suffering I had before. I cannot really believe how I managed to get through each day before I had my last op and also started on Remicade/Infliximab. I think I was just so used to being and feeling so ill that I had basically blocked it out. Maybe I was numb to it in a way. Who knows?! However, I still can't believe how I managed to keep so positive most of the time. I guess I should take comfort in the power of mind, and how you can almost "trick" yourself into believing you are ok, when really you are extremely ill. It can be dangerous though - as my specialist nurse once pointed out to me when her jaw literally dropped open at the poor sight of me. She thought she was looking at a skeleton, which she was, but I just hadn't noticed! Sometimes it takes others to point out how bad things have become. I just hope that this present bout of Crohn's doesn't get too bad. I could really do without that.

Had my fun - now suffering for it!

It's exactly as the title says - I had my fun of hiking up the mountain, sledging, skiing, a few fairly local days out plus a two-week visit to England and Wales (which I've yet to post about), but now my body is reminding me it was all too much and I'm getting punished!

Feeling very ill now with very high temperatures, chills, shivers, pains all over, diarrhoea, abdo pains, a painful cheek and jaw bone and slight swelling on one side of my face (which I'm not sure if is related to all my other symptoms, or if its sinus-related or worse if it's a sign of a dreaded infection). Also feeling totally exhausted and faint the whole time and have literally dragged myself out of bed to type this (aren't I an idiot!).

However, I haven't typed this for a moan and a whinge (although it may well look like it!). No, I've posted it because I need to point out that whilst I may look like I'm forever having the time of my life (and yes, I do savour the special moments I do have), I do have to pay for it afterwards every single time. But hey, I guess having those good times are worth feeling this ill - I hope so anyway! It would so be nice though if for once I could have a happy time and then not be ill after. That would be such a treat!

Have posted some pretty flowers to try and make myself feel a little better. Hope you like them, Ruth xx

Para penting/Para gliding