14 replies to this topic

[KeiKei]

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.

[Joelf]

Well KeiKei, there's not very much you can tell my husband about commuting to London; he's done it for the last 35 plus years and has some real horror stories to tell! Being squashed by a large commuter in a too small seat is a fairly regular occurance; as is the person who feels compelled to eat a three course meal thoroughout the journey, mostly consisting of burgers, chips and all the trimmings, resulting in greasy fingers, which they then proceed to wipe all over the seats!!

My experience with public transport is that when it works, it works well, but if there is a problem then it can make a fairly straightforward journey very cumbersome. I always travel to The Royal Free by train and Underground; I haven't driven through heavy London traffic for years and frankly wouldn't want to nowadays. Again, if everything's going well it can be an easy journey. To travel to The Royal Brompton I go to Victoria by train and then walk from there; down the King's Road and around a well known and large department store in the hope of seeing The Duchess of Cambridge (I understand it's one of her favourite shops!! ) It's a fabulous area, but a little out of my price range; you can buy a nice little bijou slum there for about £4 million!!!

I hope that when you get to The Royal Free your appointment goes well; do post and let us know how you get on.

Kind regards,

[KeiKei]

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.

[Amanda Thorpe]

Hello Kei Kei

Are you telling me the Free sent you home because you were late for your appointment? My dear friend was late for an appointment, by more than an hour, and they still saw her, mind you she's dying, nevertheless they should have been more understanding and I can tell you I would not have accepted being turned away if I had to go through PALS. Being late because of travelling issues ain't your fault. Complain and complain now via PALS (patient advice and liaison service).

Well that's my opinion but what do I know!

Take care.

[KeiKei]

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.

[Amanda Thorpe]

Thank you for clarifying that, I was totally shocked otherwise!

Take care.

[KeiKei]

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!

[judyt]

Keikei,

It is always fun to read your posts, I have woken up this morning to the sun shining right in onto the bed (almost mid-winter here so the sun is very low in the sky) and now I have had a chuckle at the thought of your MOT!!!!

I know that so far you are not having a marvellous start to summer so I shouldn't go on about how our winter is better than your summer so far. However your sense of humour should be warming those around you. Take care on the bus or train.

Best wishes from the upside down side of the world
JudyT

[Joelf]

Hi KeiKei,

I hope you get to see 'The Wizard' more successfully on Thursday and that your appointment goes well and that you have a trouble free journey there care of public transport. (To get home again just click the heels of your ruby slippers three times, close your eyes and keep repeating "There's no place like home". If you can manage a chorus of "Over the Rainbow" at the same time, so much the better!! )

The Wizard of Oz is one of my favourite films.......can't you guess!!!

Kind regards,

[Amanda Thorpe]

Hello KeiKei

Totally enjoy yourself and said delusion! You are a funny thing!

Jo, I ain't surprised about the film choice!

Take care.

[KeiKei]

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*

[Amanda Thorpe]

...the person with scleroderma skips off to the weird 'n' wacky world of scleroderma and the relative jumps onto the rollercoaster...shameless blog plugging here..what each says as they go on their merry way is not printable here...

[KeiKei]

"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 ) 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

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!

[Joelf]

Hi KeiKei,

I'm glad your MOT went well, although it's a pity you didn't actually get to see The Wizard (next time you'll have to bring back the broomstick of the Wicked Witch of the West! )

I've included a link to give you more information about Anti-U3 RNP autoantibodies in systemic sclerosis and also one to our medical pages on ANA (antinuclear antibodies). I fear that the diagnosis of Scleroderma is probably correct although it should be made on symptoms and clinical tests as well as blood tests.

I'm so sorry to hear about your other half being made redundant; sadly this does seem to be happening a lot in the present climate. I realise that's not much consolation to you both and certainly the worry and stress of this new complication can adversely affect Scleroderma. I do hope that in spite of suffering with MS, your other half will be able to find another job. (My husband retires in October and trust me, he will be helping around the house, particularly decorating!!! )

Enjoy your wedding!

Kind regards,

[Amanda Thorpe]

Hello KeiKei

Sorry about Pork Chop, in this current economic climate it's anyone's guess... I am actually glad I was give ill health retirement so I can enjoy my pension now.

It will be an adjustment having your other half suddenly around the house trying to help you out. It may pay to sit down and actually discuss who us going to do what and more importantly who is NOT going to do what.,,clothes washing springs to mind for me!

Take care.