First snow pictures of January 2009

Here are some pics that I took on a little walk I did yesterday. Unfortunately I couldn't get quite the shots I wanted, as the snow was too deep and I didn't have my snow racquets (or rackets) on. At one point, in trying to get a better shot, I actually sunk very deep suddenly and got my boot stuck! I couldn't get it free so I had to take my foot out of the boot first and then somehow lie on the snow trying not to sink any deeper, and then managed to wrench my boot free (after having to dig it out first! Was a bit scary for a little while as there was no one around either to help me. My foot was totally frozen after (being out of it's boot) and my hands were too. But it was still all good to get some fresh air.

My new diagnosis

Hi everyone, just thought I'd post my newest diagnosis! lol (I seem to be collecting these conditions!). I've now been diagnosed with inflammation in my sacrum (base of the spine) and both ileac joints. At the moment the docs are calling it "sacroilitis", but I'm also being tested for something called "ankylosing spondilitis", just in case.

So what does my new diagnosis mean? Well that's a tricky question to answer, as at the moment I'm not so sure. Well, apart from it being rather painful, at times pretty excruciating. One of my specialists thinks I should come off my current Crohn's medication - Infliximab/Remicade and instead go onto Humira, which is the same drug family. However, up until now I've been "saving" Humira for when/if the Infliximab/Remicade stops working (for whatever reason), so I see it as my "back-up" and at present, my only back-up. This means that for me, the idea of going onto Humira, when at present my Crohn's is mostly behaving itself (certainly compared to how it used to be!), would be rocking the boat, and so I'm not keen. However, apparently the drugs/meds they use to treat Sacroilitis/inflammation are the same as what they use to treat Crohn's. It's a shame then that my current Crohn's treatment is not working for the sacroilitis. I asked my doctors about this - and he said he didn't know why it wasn't keeping the sacroilitis at bay. However he did say that the sacroilitis is a kind of "secondary condition to Crohn's", not in everyone of course, as some people get sacroilitis without having Crohn's, but in my case it's the Crohn's. Oh well.

I should know my "fate" next month with any luck, when I will go for my next dose of Infliximab/Remicade and also should get some tests results and speak with my consultants. I hope I will have some say though on what might happen. Thankfully, my Crohn's consultant doesn't seem in any hurry to bring me off Infliximab/Remicade, so I might be ok. As for my sacroilitis - it's a painful thing - some days I can hardly walk with the agony, but if I can find some way to cope with that (and ideally not by popping pills - although I have been given the nearest equivalent to morphine) then all well and good.

Interestingly though, at christmas I had some myofarcial release treatments (not sure I've spelt it right!), which somehow helps heal connective tissue (I think! lol) and since then my pain has practically vanished! Yippee - just praying now that it will continue to keep at bay. Before I had the treatments I was in a lot of pain, and my heart was sinking as to how I would manage all the car journeys I was having to do - with all the visiting of relatives over the christmas period. So I think I might have found the answer as to how I can cope with this new condition - have regular treatments of myofarcial release. I don't know of anyone here who does it, as I don't think there are many practitioners in the world. Think most of them are based in england, so I might have to wait until I return to angleterre!

Will try to find some more info on myofarcial release and post it on here. Ruth xx

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.