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About KeiKei

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    Bronze Member

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  • Location
    Oxford/Sheffield, UK
  1. "Toto, I've a feeling we're not in Kansas anymore..." We didn't see the Wizard, but we did see one of the very helpful, overworked doctors. Turns out half the doctors didn't show up for work that day, so my 1450 appointment turned into a 1810 appointment. Good job I loaded up my trustie 'smart' phone with novels. And remembered to bring fruit pastles for company. The MOT went reasonably well, given the lateness of the day. Turns out the drugs do work, (and The Verve know nothing :P ) as my 'skin score' has improved. Go skin! And they're looking at doubling up my MMF, weighing up (lite
  2. Oh no. We had a marvellous and glorious start to the summer. But that's it. Just the start. Now I'm thinking Noah might have had the right idea building a boat. But let’s leave the mosquitoes behind this time. The sun was shining this morning, so things had better be looking up as I'm at weddings and do not wish to be a drowned rat. Not to mention the Eskimo look I seem to be parading these days. I thank all those who appreciate my humour. My general upbeatness, don't let things stand in your way (until you're imitating a log) isn't always appreciated ;) The doctors keep telling me to take
  3. Well, a bit of light is shed on the little mix-up I had last month. Received my new appointment letter for my iloprost infusion week, phoned the number on the letter as directed, spoke to the admissions lady on the other end of the phone, and having forgotten to have the letter to hand, she put me in touch with the ward, which didn't happen last time. So I can understand why I was told duff info. So I'm all booked in for my spa and relaxation week in July. I wonder if they'll let me arrange for a back massage on the ward... ;) Maybe throw in a pedicure and manicure... In the mean
  4. Hi Amanda, Running late wasn't the total reason for my almost immediate return home. My appointment was supposed to be a one day admission for Iloprost - if you look at the letter. When I phoned to double check, they confirmed it was one day admission. I thought this was odd, as I recall the doctor telling me it would be a couple of days for Iloprost, but the doctor also told me I'd be seen in January. *shrug* Figured the Hospital would have given me more details if I was supposed to stay overnight... or a couple of overnights. So when I showed up and they told me it'd be the rest of the week
  5. Jo, hat's off to your hubbie, I don't understand how he does it! I failed to see the wizard. Spoke too soon about making my appointment on time. We stopped at Hillingdon at 7:15 and didn't make it to Baker Street until 8:40. So by the time I'd tubed it and made it to reception I was over an hour late, and basically had to come back home. :( Totally different kettle of fish on the way back out. Only took 20 minutes to get from Baker Street to Hillingdon. When I finally found the coach stop. And it showed up. I had debated the train, but it costs so much! The coach is less than a 3rd of t
  6. So, I'm awake before any sane person should be, and as it turns out there are a lot of insane people out there! I am also sat on a near empty bus, hurtling it's way towards London, and I am one of the 3 people that's sharing a seat. At least the bloke doesn't smell! However, both my thighs together isn't a patch on this bloke! He's ginormas! Which is making it difficult to type without elbowing him in the lower ribs. Must be nearing London, we've hit traffic. Also feeling slightly queasy. Motion, heat and slightly claustraphobic. Should make the Royal Free on time. Can't remember the last
  7. Heya, I never thought to ask here for recommendations for parking and accommodation near the hospital! D'oh! So thank you Sooty for showing me the way :) Last time I went I had a midweek, late afternoon appointment, so wasn't so bad for me to park cheaply on the outskirts and tube in. But this time they want to see me at 8am, the day after May bank holiday for a day of Iloprost. I'm coming down from Sheffield and stopping over with my folks in Oxford, before catching the coach and tubing the rest of the way. But still means I have to set off before any decent human being has any right to
  8. Hi Helen, I'm sorry to hear about your mum, and empathise. In terms of your immediate concern with malnutrition, I’m assuming your mother is not taking any dietary/nutritional drinks? I would recommend (from personal experience and current use) nutritional drinks. Much easier to swallow then solid foods. I drink them alongside my tiny meals and on those days my tummy refuses to behave. I’ve only tried two brands. You can google them easily enough. One I use is milkshake based, but I’m sure I’ve seen soup. These need to be prepared with water or milk. The other I’ve tried was a ready
  9. Add my voice to the praise and seasonal greetings. Thanks for the links Jo, I've been reading avidly. I put my young-ish appearance down to my partial Chinese heritage. My cousin says it's because I dress and act like a child. *pout* Do not! Why do I drag her along!?! I've always been of a pale complexion, but the skin involvement means I am turning "yellow" and my face looks like I'm on a constant drinking binge. Thankfully, now the affair with the toilet has ceased, my ruddy complexion has started to look less ruddy. Helen, Lizzie thanks for the encouragement. I don't have digital
  10. Seasonal greetings to all and a bah-humbug! The holidays have yet again snuck up on me without any warning. It's ninja prowess improves each year! Things have been ticking along, and I've not visited here in a while, as life has gotten in the way. I have been to my London dinner and theatre trip, where I sat in a very warm, very crowded corridor and watched my hands turn all sorts of pretty blue and white. I met some very nice doctors and nurses who asked me to confirm my name and age several times to looks of disbelief (I do look a lot younger than 30 and am still ID'd when buying al
  11. Hi Shelley, Your post has made me chuckle. :) By all accounts I may still have surprises in the pipeline to look forward to. I just hope when it's my turn, I can hold it together as well as the people who have this condition far worse than I do and have had to put up with it for longer. It's still a fairly new novelty for everyone. Guess that's my ten minute tea break over with as I'm actually being asked to do some work. Ho hum. Bit of a slow day otherwise.
  12. Hi, Joelf, I like your suggestion and wish to implement it! Now, to bribe the IT department to allow a webcam. I can honestly say, I am surprised to still have the fan heater. After a few days of holiday, I come back expecting to find a ransom note. Don't think anyone's thought of that. And I may have just voiced that aloud. Oops! Have now had confirmation of my dinner and theatre date in London. Erm, I mean my appointment at the Royal Free. Have seen the physio and occupational therapist. Some handy hand exercises that I can do at work and in the car... just need to remember now!
  13. Hi Loki. Wow. As I'm sure I've written before, I'm not ill!!! :) I have recently seen an Occupational Therapist, but didn't find it too helpful as a lot of my stresses in life revolve around my commuting halfway across the country each weekend and looking after my rather ill Multiple Sclerosis boyfriend. He's tried to slice off his finger today instead of slicing the bread <*sigh*> And I won't see him 'til Friday now to kiss his boo-boo better. I have been advised to look at the UK disability living allowance, and it's been suggested I look at getting a cleaner, but quite fra
  14. Yeah -- that's the one! I keep looking it up but can never remember the next time someone asked me. D'oh! I had to look up what a biventricular ICD was. I have to look up just about everything really! Thanks for the link, Jo. I have tried some of them, and it's depressed me at how bad my hands have become. I paint and am finding it really hard to hold a brush lately. I haven't bothered to pick up my needle work yet.
  15. So, having showed up to my rheumatology appointment nearly two weeks early, I was ushered in to see the tummy doctor instead (luckily for me they're in the same department!) Someone I hadn't met before. Young, attractive, from Portugal. Pleasantries were exchanged. I hope. I forget. Too busy drooling. :blush: Ahem. MRE results were back and just confirmed what they already knew, which was not a lot. I’m just glad the pictures came out clear. I am not subjecting myself to that again any time soon! The good news is nothing extra was found. So I'm not any iller than they suspect. Whoo hoo! Th
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