My Consultant Wants me to be Hattie Jacques

dreamdaisy

Had my consultant appointment today, with my lovely lady consultant. She showed how thrilled she was to be seeing me by turning up 35 minutes late for our meeting: scheduled 2pm, the first after lunch, she swans in at 2.35. As some of you know, I am not in the best frame of mind at the moment, had a very frustrating meth stabbing this morning (appointment time 8.45, first in, got in at 9.20) so this did not augur well for my temper.

The last time I saw her (9 months ago, not as long as I thought) she expressed herself as being delighted with how the humira was working and asked what pred dose I was taking. 7.5 was my reply. Oh we need better than that, she says, start reducing it. Do it slowly. I did, and by Feb/March I was on nothing, or the odd 2.5 to top up.

The last eight weeks or so have not been easy. Pain levels have been astonishing, and in lots of new areas, yet the inflammatory levels have stayed in single figures. (Apparently the pain is not associated with inflammation, but every joint she prodded today hurt.) I eventually gave in and went back on pred, fairly recently. Started on 2.5, now on 5 and still feeling ugh. She's put me on 20 for a week, 15 for two weeks, 10 for two weeks then 7.5 thereafter. I've been on them since Feb 07, so she's warned me that the side effects are now in the high-risk category, so as far as I can tell by the end of the year I shall be fatter than Hattie Jacques, with osteoporosis, diabetes, BP off the scale and covered from head to toe in bruises as my blood vessels break down. I suspect my inner sex-goddess will then become very hard to locate then. Yip-flaming-ee. Ho hum. Will now go on tinterweb and find 'Muumuus 4 U at Rock-Bottom Prices!' Have a lovely afternoon/evening everyone. I'm off for a sulk. DD (Time I grew up, isn't it?!)

theresa4

HI DD

Sorry youre having a rough day on top of a normally stressful time. It is so annoying and frustrating when people run late for appointments especially when you purposely book the first in the hope you wont have to sit around so much. HOw rude of them.

Hope you have a better day tommorrow

Love and Hugs

Theresa x
ps Hattie Jaques is very pretty!!

annie_mial

You sulk as much as you like, DD! I've already got the osteoporosis, diabetes, high BP, depression and muu-muus so I have not got much left to lose each time they decide to give me a mega-dose of Pred.

I am improving for the first time since January now, so there is light at the end of the tunnel; I'm on 7.5 too but will be starting a slow taper to 5 next week. As long as I can live with my pain levels I will hold out, so here's hoping. I'd love to be down to 5mg again before the winter sets in (I was on 5mg daily for 16 months and lost two stone).

I find caftans very helpful!

Annie

skezier

Hi DD,

Sometimes the 'cure' is worse than whats going on but if its just short term maybe you will not have the weight gain you think and you may start to feel so much better?

I don't know why they turn up late, we have the same and the most uncomfortable chairs in the world! I normally stand, well weave actually and I was taught that by one of the best!

I so hope you do find it helps and well you know you have us all in your corner and we will be there to catch you if you start falling to rock bottom. A sugary ((((( ))))) but its meant, and fingers crossed and well hopefully you will be able to reduce it again soon. You take a bit of time for you and we will step in and keep you buoyant how ever deep the water gets. Luv Cris xx

marion1952

Oh DD

so sorry to hear things are grim for you at the moment ... I know that you know what pain is, so for you to say it's bad at the moment it MUST be VERY bad...

I can't give you any advice, sorry, only to hope that the increased pred does work and that you can get down to the minimum dose again asap..

Marion x

speedalong

Hi DD,

sounds like a tough day what with feeling c**p to start, meth stabbing and consultant appointments all in one day. I do wonder how they can justify starting clinics so late ... us mortals have to be on time for work and it just makes the whole clinic run late ...

I don't understand your meds well because they are so different to the way OA is treated. When you feel up to it, if inclined please explain. Its good that the inflammation is controlled. But if inflammation isn't causing the pain does anyone know what is? Is pred the only med that helps with your pain?

You said that it was the last 8 weeks or so that the pain was unbearable ... but you were on lower than 7.5 of Pred before the 8 weeks of hell started ... so once you have had your mega doses of pred again and got the pain under control you might be able to lower the dose and find a maintenance dose lower than the 7.5 but higher than none ... which would lower your chances of all the horrid side effects??

Speedy

PS Hope the sulk helps!! And don't dare apologise or threaten that you will "grow up!"

frogmorton

Oh no!!

I worked it out from the title

The sex-godess within will always be in there I promise :? You just need to beleive it.

Serioulsy though - you ahve been in agony havn't you? in places you didnt know you had at that something has to be done dosent it?

This has to be worth a try.

I think we will all thank her for the info that pain is not related to inflamatory markers though......very interesting - wish they all knew that.

So long as you dont end up with Hattie's brother that's all...... :shock:

Soory DD

Love and lots of hugs

Toni xxx

knitternsk8rgirl

Hello DD
Really sorry you had such a cr*ppy time this afternoon. I know what you mean about your inner sex goddess - mine is permanently out to lunch for the last . . . oohh, a long while .
Hope you feel better soon.

ironic

Hello DD,

You really have been going through the mill for a while now.

I know this feels like a setback, but maybe, just maybe if you can get a little relief you can start to get some balance back into your life. Your a very strong person DD but you really need a break from the pain your in.

Sorry know I'm not much of a help, but I do want to send you my support.

Lv, Ix

puffin

Hi DD,

What a lot to cope with in one day

---

incessant pain, preparing for, getting to and undergoing the ordeal of two separate appointments, both made more difficult and depressing by the extra waiting.

On top of these there was the added factor of this changeable weather which you described in another post. Trying to cope with this and the inevitable tension before the appointments is extraordinarily hard.

Other people have little idea of the effects of low air pressure, intense heat, humidity, wind, cold etc. on us. You know this but you may be like me

---

able to recognise this factor but able to do ---- all about it!

Hope you mentally gave yourself a medal for today's effort and gave yourself that treat you mentioned.

Hope to read you are feeling better tomorrow or at least very soon.

Puffin

tillytop

Hi DD,
Not sure if you are still sulking this morning (!!!) or if the Pred has kicked in yet and you feel a bit better. Hope the latter. I sent you a rambling PM yesterday evening in response to your post but this morning I can't see it in my sent/out box so think it might have got lost in the ether.
When you are back with us, please let me know if you didn't get it and I will try again.
Hope you are doing better today.
Love Tilly x

dreamdaisy

Thank you everyone for your kind words and encouragement. Thinking about it all at 2am I remembered that a certain Miss J had a VORACIOUS sexual appetite. Feel greatly cheered. 'Bout time something nice happened.

I have decided to spend most of today in my nightdress. Feels like a good move. Unfortunately I have to work later (the mysteries of er/ir/ur for Charlie, followed by the ending '-cious' for Florence, followed by comprehensions skills for Saul) but then I can return once more to the comfortable, dressed-down look whilst 'cooking' fish fingers, chips and peas for The Husband. Will try not to open a bottle of white to accompany. Been good this week, none since Sunday. I am losing my touch.

The Husband took me out for dinner last night, to a gastro-pub in a nearby village. There is a certain young waiter there, French, with the most wonderful accent when he speaks English. Frenchmen speaking English is one of my things, if you catch my drift. TH announced he had to go to the loo, told the waiter that his wife had left her glasses at home, so would he kindly read the menu to her?! I was in heaven. Then laughed with TH for the rest of the evening. Had an excellent dinner too.

I scored 31 on the DAS test. My best result to date! Everything still zinging this morning - God they press hard don't they? Masochists the lot of 'em. My French thingy (joie de vivre) is sort-of back. Sorry for the moan yesterday, I promise to be better-behaved. DD

speedalong

Hi DD, you were up early ...

Sounds like dinner out with TH and the l o v e l y talking french waiter were a good mood lifter. I wonder if that was what stimulated your 2 a.m. thoughts ....???

Didn't realise you tutored ... a few of my friends do that ...

Prefer red wine myself. Not drunk much since op only a couple of times ... not fancied chocolate either ... maybe I'm not as well as I thought???!!!

I scored 31 on the DAS test. My best result to date! Everything still zinging this morning -

Double dutch to me ...

Sorry for the moan yesterday, I promise to be better-behaved.

Behave how you like!! Now what have I encouraged ...????

Speedy

dreamdaisy

The 2am thoughts were triggered by pain - the DAS test is where the rheumatologist squeezes each joint in turn to assess pain/damage/ or just for the hell of it ' cos they like hurting you. They use it to determine the amount of impact that one's arthritis is having on the body, so yesterday for me 31 joints were particularly painful. Fantabulosa!

I coach/tutor dyslexics, all ages and all abilities. I have been running my own little business since 1995, but now I'm down to only 6 people per week. Not earning anywhere near enough which is causing some problems but hey-ho, can't have it/do it all.

I spontaneously went off red wine in 1996, started drinking it again (spontaneously) in 2000, haven't touched it since 2003. I cannot stand spirits now, so it's the occasional pint or three and white wine. Haven't had that this week so I know I'm ill!

I hope you are having a lovely day, the weather is better up here, warm and sunny. DD

frogmorton

Hi DD

Hoping those joints are recovering from their squeezing yesterday :?:

Also hoping you are dressed?

Even more hoping you got dressed last night before the meal out :shock:

I have the same thing with Irish accents....mmmm....





sorry went off somewhere then :oops:

White wine is my drink too (well that and cooking sherry)

Love

Toni xx

theresa4

frogmorton wrote:

Hi DD

Hoping those joints are recovering from their squeezing yesterday :?:

Also hoping you are dressed?

Even more hoping you got dressed last night before the meal out :shock:

I have the same thing with Irish accents....mmmm..


sorry went off somewhere then :oops:

White wine is my drink too (well that and cooking sherry)

Love

Toni xx

Oh yes Toni an irish accent mmmmmmmmmmmmmmmmm
My best time was a girly weekend in Ireland irish firemen honking their horn at us and shouting out the window with their lovely accents mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 2 in 1 yummy.

now in dreamland
Theresa xx

dreamdaisy

Everything zinging nicely, thank you frogmorton. My toes especially, strewth! Have just managed to crawl into the shower, took pain meds at 11, they're at their best now, so I have finally begun my day. Had the 20mg this morning, beginning to feel brighter, now couldn't care less about any of it. Other people have lovely lives, I don't, so what? I can still laugh, still think and learn, still drive my car, can still drink tea, swig wine and see friends. That's plenty. For those with lovely lives, old age approaches. Ha-ha! (Think Nelson from the Simpsons for that laugh.) Then they'll find out. And won't they moan! Hope you are well today. DD

frogmorton

Ah daisy

Right attitude my girl - the ONLY attitude I think I 'heard' the right laugh anyway

No-one's lives are perfect anyway - we is far more beautiful and funny and intelligent and dare I say it - s*xy than them anyway

I is not so bad today at all.

Much better now I am thinking of irish accents eh Theresa.

Hope the pain med get you through today.

Love

Toni xx (((())))

skezier

Oh DD your life isn't s grand just now but you are still a lovely person so hang in there and yep at some point in time the people that give us grief will learn....... I nominate my ex for green monkey disease actually Sorry Flower went off the track there...... still off it actually....

You will get there and I know you know that. A ((( ))) cus its thursday and get your mp3 on and drift off somewhere nice. Luv Cris xx

dreamdaisy

Are you up in your tree in your pretty pink frock skez? If not, why not?! It's a good place to be! Will be schnaussing much later, lots of molfsee, put it on repeat. DD

speedalong

The 2am thoughts were triggered by pain

I try meditation CDs ... that's where I'm going wrong ...

- the DAS test is where the rheumatologist squeezes each joint in turn to assess pain/damage/ or just for the hell of it ' cos they like hurting you. They use it to determine the amount of impact that one's arthritis is having on the body, so yesterday for me 31 joints were particularly painful. Fantabulosa!

Sounds archaic!! Can't they just ask you?

I coach/tutor dyslexics, all ages and all abilities. I have been running my own little business since 1995, but now I'm down to only 6 people per week. Not earning anywhere near enough which is causing some problems but hey-ho, can't have it/do it all.

Wow. Could try publishing some of your materials ... or set up some sort off web resource ... Would tutor pupils with other LD too - dyslexia friendly methods would benefit a lot of struggling learners. Or are you down to 6 because it is all arther allows?

I spontaneously went off red wine in 1996, started drinking it again (spontaneously) in 2000, haven't touched it since 2003. I cannot stand spirits now, so it's the occasional pint or three and white wine

.
I got very ill when volunteering abroad in an orphanage on white wine years ago and have never been able to stomach it since...

Haven't had that this week so I know I'm ill!

Hence you sound so bright ... I'm learning!!

I hope you are having a lovely day, the weather is better up here, warm and sunny

Not so here - still wet and grey here ... mild though.

Speedy

dreamdaisy

Down to six for two reasons, arthritis destroying me and Gordon the Moron destroying the country. Made upo for lost swig time on the white wine tonight. Hee-hee!

I am completely baffled by the medical professsion. They put you on steroids to give you a boost, (big doses, instantly) then spend ages telling you to get off them, one slow, small step at a time, all the while telling you how awful steroids are. You do so, believing the hoo-hah about the evils of pred, then, when things go wrong again whack! straight back on them at massive doses, then start the slow crawl of reduction again. I shall re-name myself Sysiphus (sp?). DD

caprica

Sorry to hear you're having an awful time - but I have to say you have a great sense of humour, this thread has had me chuckling away at the less serious bits!

Enjoy the white wine.. I'll be having some of that tomorrow!

dreamdaisy

Thank you caprica, am down in the dumps, have to cheer myself up somehow. Waiting for the libido to kick in, ho-hum . . . . . . . DD

skezier

Hey DD chuck us a glass full please

The medical profession and steroids...... they love 'em, use them for so many things but they are just not good for you BUT they never seem to give you something else to do the job........ There are different types of steroid, do you think a different one could help? Mind all of them are not ideal for long term use.

We should have a party t cheer you up..... I shall bring pink champagne and some pasties... to be eaten in the bags Go to have marti sauce as well

You have a good night and I shall hope for better tomorrow for you. Luv Cris xx

speedalong

Hope the wine helps you reach some kind of oblivion for few hours. Drink some water too ....

Speedy