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KeiKei

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About KeiKei

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    Bronze Member

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    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 (literally, apparently I might be too light for the double dose) the pros and cons. Have also had it confirmed that I am ANA and Anti-U3 RNP positive. I have no idea what that means!! Other than there's a low chance I've been mis-diagnosed? Could only hope they had it all wrong and it was just a really bad virus :P In conclusion, I am due a full service, and as I'm already booked in for a weeks oil change, they're going to try to fit the other bits and pieces in. Lung function, echocardiogram and EMG here I come! The wedding on Saturday went without a hitch, (wet weather program was initiated, so no drowned rats) the groom's childhood friends were all placed in the naughty corner so we wouldn't upset the other guests and we didn't get to bed 'til after 3am. Good day had by all. :) On a more stressful note, my significant other, light of my life, apple of my eye, pork chop on the end of the poker stick was made redundant over night. He received his marching orders on Thursday and told to clear his desk by close of play Friday. Over ten years of his life dedicated to the place and he got less than 48 hours notice. He's more upbeat about the job loss then I am, but he's thinking he'll be able to help more about the house and be the "house husband" whereas I'm thinking, 'Oh no. Tasmanian devil's being let loose in my house!!' We think it's unlikely he'll find another job as his MS is just being so very naughty. We have another wedding to go to today, and looking at the time, we'd better get a wiggle on. So, tata for now!
  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 things a bit more seriously . But leopard and stripes etc etc Oooooh, now there's a thought!! I may try skipping and singing down the corridors of the hospital... well, maybe not skip, as I'll probably end up acting out a scene from sleeping beauty... but definitely worth trying the singing. Do you think the other patients would join in? Or will I get re-directed to the padded ward? We're off to see the wizard, the wonderful wizard of Oz... Erm sorry Jo, wrong song... Somewhere over the rainbow, way up high, there's a land that I've heard of once in a lullaby... *skips off humming to herself*
  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 time I'm off to see the wizard properly for routine 6 month-ish MOT on Thursday, hopefully I won't need a service as for the most part I feel fine, except for the need to be comatose every now and then. So looking forward to the joys of public transport. Then more weddings to attend! Costing me a small fortune this year! Toodles, from a very skint me!
  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 and part of the weekend, I wasn't prepared for it. So rather then try to rearrange my week - I'm supposed to pick up my MSy other half from Sheffield and drag him out to a wedding this weekend - we decided it'd be better to reschedule. Felt sorry for the nurse who was very nice and a bit baffled by the cross communication. Ce la vie.
  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 the price of a train ticket, and it drops me closer to Hampstead, so I spend less time on the tube. Because "home" is a commuter town, you can't actually get a seat on the train. Once upon a time that wouldn't have been a problem, but these days I'm too fatigued to stay standing for the hours commute. Procrastinated enough. Better do some work. The stuff I'm paid for. Hummm.
  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 time I took public transport. Now I know why.
  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 be awake :P So I suspect this may just be the end of me! Might be too late for a change of plans now, but I'm also heading back in June. Soooooooo, I'm now cap in hand to borrow this post and hope Amanda takes pity on me, so that I may also get the name of the reasonably priced place to stay? Pretty please with a cherry on top? And a handful of extra sprinkles? And if you're wandering about the hospital on the 8th Sooty, maybe see you & your hubbie there? I'll probably be the zombiefied looking one propped in a corner :P
  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 to drink juice, which I didn’t like the taste of. I think they also do ready made milkshakes. I’m sure there are other brands available if you look about. Hope this helps. KeiKei
  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 ulcers, just permanently colour changing hands, so I'm unsure if I'm actually being booked in for an infusion as I may not be considered bad enough? Sounds like I'm brewing a pot of exotic tea. "An infusion of spices, fruits and flowers lend this tea a sweet, rich, flavourful taste and aroma..." I got the impression that the infusion is not pleasant the first few days, so think I may stock up on books and ease myself into the routine, if that's the route they're going to take. Not sure I could handle 24 hrs of being hooked up. I really can't sit still. I am glad I went to see the specialists, as rather depressingly, my local Rheumatology department told me they couldn't really do anything for me as they didn't have the expertise. I am not knocking my local, they have been amazingly quick at diagnosing me and running me through the gauntlet, and I didn't have to mention the Royal Free, they volunteered to refer me. Am eyeing up the gazillions of boxes of chocolates and biscuits sat as far away from my collegues as they can possibly put them, and as close to me as they can without cluttering my desk. There's only 5 of us in the office. *sigh* I'm just going to have to martyr myself and eat all the nasty calories for them :P A perk to SSc!!!
  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 alcohol). We broke an elevator, then played chase the cousin round the rabbit warren that is the Royal Free looking for toilets/pharmacy/working elevators. My cousin has refused all future dinner and theatre dates. I have come away with a goodie bag full of tabletie goodness. Browsing through a couple of posts ref Vit D or lack of (which I have... lack of Vit D that is) and an off the cuff remark from Amanda about no sun when on MMF was a bit of an eye opener, as I'm due to start a course of MMF next year (I am so not taking them over the holiday period as there's weekly visits to the vampires, and I wouldn't want to spoil their holidays pin pricking me looking for a vein that hasn't dried out) and wasn't aware of that titbit. I've other's to take but I forget how they're spelt. I've also changed meds from Lansoprazole to Rabeprazole, as the Lansoprazole seemed to have stopped working. There's talk of hooking me up to an IV for 6 hours a day over 5 days to administer illoprost (I think??). I just hope they have xbox or something if they decide it's the way to go. So, new years resolution... take more drugs! No wait, I'm sure that's not right...
  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! One, two, miss a few, nighty-nine, one hundred! Time to go home. Laterz!
  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 frankly, the forms are over whelming and I'm not sure I'd be happy for some stranger to clean my house. (CONTROL FREAK!) Especially as we're still moving in (it's been a year already! Where'd the time go?!) There's also loads of DIY and unpacked boxes and therefore clutter. How'd we accumulate so much clutter?!?! We haven't even filled the forms out for the “oh so MS-sy one” yet, and he’s much much much worse than I am. (He’s only able to work part-time, 2 days a week). You need a degree in filling out those forms! As for treatments, I'm not really on any serious medication/treatment, nor have I been offered any. I guess I don't need any, as everything internal has been given the all clear. I am however, soon to join those of the Royal Free! So they may pick up something that was overlooked by my local hospital. I think dinner and a theatre show might be the outcome of the day. Now, which show to see? I think I've seen most of them already. How'd that happen!? Meanwhilst, I think I'll treat myself to a lovely two course meal of complan tonight. Yum yum...
  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! The main tummy doctor popped his head in to do a quick review – nice of him to drop in – and asked if I’d been to the Royal Free yet. My Jedi mind powers amaze me sometimes. Down it went on my notes for the Professor and I was sent on my merry way. Saw the Professor two weeks later (the actual Professor, not one of his lackeys) and reviewed my file and scans – I am actually genuinely interested in the pretty pictures. He said he couldn’t see anything off kilter, but admitted to not being the expert and said he’d refer me to the Royal Free. Day out in London! He listened to my chest, said all seemed okay, but some area sounded louder than he thought it ought to. I’m also vitamin D deficient (hummm, more sun. I think a holiday in the Caribbean is the correct way to fix that…one can only daydream) and that oddly my blood works show either no sign of SCL 70 or no unusual activity with the count. I forget. I have to go back to the general practitioner at some point to become a guinea pig for the Raynaud’s and they’re booking me in for some physio on my hands, as they’re becoming more and more claw like. And are actually starting to hurt, which is a new one. Work has finally provided me with my own private little fan heater, so now everyone is jealous, as I’m the only one not wearing coat and scarf. And just in time for winter. It’s nailed to my desk during the day and kept under lock and key at night. Too many hungry eyes keep straying towards it. So, happily ticking along really. Ciao for now!
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