Yesterday, the last day of February (and where possible, the 'rare' 29th), is Rare Disease Day. 2013 is the 6th year of celebrating international Rare Disease Day, with hundreds of patient organisations from more than 60 countries and regions planning awareness-raising activities based around the slogan 'Rare Disorders without Borders'.
I was fortunate enough to attend the parliamentary reception at the Houses of Parliament with my mum on behalf of UKPIPS. The Earl Howe (Parliamentary Under-Secretary of State for Quality at the Dept. of Health) talked about specific pledges and made it clear how important it is for each patient with a rare disorder to have a care coordinator. This is something that I would really benefit from as trying to manage over 10 different consultants, GP, various hospitals, clinics etc is confusing and time consuming, not to mention frustrating.
It was also really interesting to meet patients with other disorders and rare diseases that I hadn't encountered before but who suffered similarly.
It's coming up to a year since I was diagnosed with CVID and I can't believe how quickly the time has gone. It's also now been 2 months since my last hospital admission. As a treat, I'm flying to Poland with my lovely friend., George, and straight after that flying to Argentina. 6 months ago I couldn't foresee this. Friends, work, polo, good food/wine and puppy....2013 has started off really well and I hope that this is set to continue.
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Wow! It seems like a lifetime ago that I last updated this. I hope that it finds you all well.
Well what a start to 2013. Having had a horrible end to the year (with Type 2 respiratory failure and a stint in hospital/intensive care in Spain just after Christmas), I seem to have bounced back for the new year.
It's now been 5 weeks since my last admission - a record for the last 2 years. This has certainly given me a lot of hope for the year ahead. I'm playing polo again which is giving me added incentive to stay out of hospital and I'm really enjoying seeing my old polo pals again. So things are looking up but I'm pacing myself - don't want to jump the gun.
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| My new puppy..... |
Another exciting development is that I disappeared for a few hours the other day on an adventure to find this little one.
She comes home on 20th Feb but at the moment has no name - any ideas anyone? I fell in love with her straight away and can't wait to have her at home. She will give me a reason to get up in the mornings even if I feel really poorly. I'm going to take her to puppy training classes as I know that I will be too soft to do this by myself :)
I think everyone's starting to get annoyed with me now - I've been jumping up and down and running around like a 4 year old since I got back from seeing her.
To all of you that I haven't seen recently, I apologise. I will get there - it's all just taking a little bit longer than I anticipated. Thank you for bearing with me.
Lots of love x
