Please kick me up the bum

LignumVitae

I just got a call from Alcura to arrange my next meth delivery and it has left me a bit disappointed because when I saw the number I was hoping against all hope it would be about my etanercept delivery. I was told a week ago that if the funding was agreed then I would hear in the next two weeks and I can't help thinking that if Alcura haven't heard by now then chances are I'm not approved and so will have to go for alternative funding which will take three months. My eyes seem to be leaking a little. I'm very sore and stiff and things seem to be going down hill further and there isn't a thing I can do or the hospital can do. My little tiny hope is that if they hadn't approved funding the friday before last and I was going to have to wait for three months, surely they would have told me? I guess though that things are very busy and I am just one patient so maybe not. Sorry, I'm trying to be upbeat. I had a little moment of miracle at the weekend when Tegen managed to say Mummy for the first time and I just keep thinking of that to keep me going. It was very beautiful! I felt like I had earned my stripes.

stickywicket

Tegan, you are a star. Look what you are able to achieve after such a short time in this world! No, not saying 'Mummy' - though that is a wonderful achievement – but managing to keep a very sore, achy, sad and worried Mummy going.

Sorry, LV, but I don't do the proverbial boots. Well, I do, but not to those who have reached the end of their tether, painfully tied a knot and are hanging on desperately. I can only wonder, and hope (because I'm standing outside the situation), that you are doing a Mr SW here. He is very much inclined to expect people to get back to him immediately, despite all the evidence to the contrary. You say

LignumVitae wrote:

I was told a week ago that if the funding was agreed then I would hear in the next two weeks .

By my maths that means you have another full week to go. Alcura hearing, processing and mentioning it when sorting out your meth delivery is an entirely different ball game – or probably several. Think right hands and left hands. In fact, try not to think at all this week. Just concentrate on the 'Mummy' sound and take stock again next Monday. (((())))

mig

Hi LV,No kick from me but if you can feel someone hugging you then its me.Mig

LignumVitae

Thank you both. You seem to have both made the eye leakage worse.

I think I was expecting a bit much for them to sort it within a week. Mr LV keeps saying I should ring the hospital and ask about progress, I keep saying I should wait until the two weeks are up at least - I just got a bit Mr LV (and Mr SW it seems) because I was really hoping when I saw the number that this would be it. As you say Sticky, that would have meant a lot of joined up admin between the NHS and their delivery company - wishful indeed. I'll try and remain optimistic and I can't think of much nicer things to focus on than the sound of 'mummy, mummy, mummy' - unless it's when I'm having a wee and then the pressure to hurry up does get to my bladder

dreamdaisy

Alcura do my meth, Healthcare at Home dealt with my Enbrel and now humira. It's not fun fitting in with two organisations, especially as the meth delivery people won't take a full sharps, another visit has to be arranged for that. You're lucky that I am in too much pain and far to stiff to even attempt to kick you and I wouldn't anyway because I've been there too, waiting for a 'miracle' med and the time seems to drag. Hopefully, when you do get it, it will be just the ticket but please try not to raise your hopes too high: that's another lesson that I've learned over the years. DD

Boomer13

Waiting and aching is no fun and waiting, aching and having your hopes up, only to see them dashed is excruciating. Hang on a little longer, I always count on system busyness to delay things. Enjoy the first "mummy" from your little cutie

I'm waiting too, although I have been approved (in Canada, they do the approval thing as the initial step). Just waiting to get worse again :roll: after all this waiting to get better! And, for an uncooperative liver to cooperate again.

Waiting and anticipating outcomes certainly tests patience.xxAnna

dibdab

No kicks indeed, just hugs (((((((((( ))))))))). Go cuddle your beautiful babies and remind yourself what an awesome job you're doing as a mum.

Hope that the funding is there very very soon!

Deb xxxx

Slosh

As with everyone else, hugs not kicks, and enjoy being a proud Mum.

LignumVitae

Thank you all for being so kind. I do need a kick up the bum though - I just need to be patient and wait. I've come this far down the route, what's a few more weeks or months? Painful, tiring, that's true but arthritis is these things and I'm lucky to have it at a time when there are treatments available and seemingly constantly being developed - you don't have to look back too far to a time when steroids would have been my only real option regardless of the damage they did. I'm being treated by some very good medics who are helping me and you only need to read a handful of posts on here to know that not everybody is that lucky. I heard about the poor diagnosis rates for lung cancer this morning. It is dreadful and obviously terminal and needs to be improved but it made me wonder what the diagnosis speed and rate was for all kinds of inflammatory/ immune involved arthritis - woeful would be my case and years not months for many of us. I understand it isn't terminal and therefore as necessary to diagnose as quickly but still, I bet the rates are shocking.

stickywicket

LignumVitae wrote:

I've come this far down the route, what's a few more weeks or months?

Whoa there! Steady on, girl. No-one mentioned weeks, let alone months. They said 2 weeks so allow them 2 - no more. After that, chase it up.

Yes, we are all lucky we have this disease in an era when it can, at least, be treated and in a country where the meds and surgery come free. (As someone pointed out yesterday on Radio4, if ebola had started in the Western world, there'd be a vaccine / meds / cure by now but there's nothing in it for the drug companies when it's 'merely' poor people in Africa. (What an indictment of the world we live in :shock: )

BUT we are unlucky in that arthritis, of any kind, is not a glamorous disease. I never understand why more isn't made of the number of children who get it. I get the distinct impression that GPs aren't taught enough about it ie from reading on here it seems that some do a blood test and decide on the basis of that whether a rheumatology referral is required. I know it's a key factor, I know rheumatology units are struggling to cope and I know GPs are often put under a lot of pressure by patients who think they know more than they do but......some patients do slip through the net.

Crikey, LV, look what you've done! I'm here pontificating and it's not even lunchtime What I came on to say was keep plugging away and to drop by a few more (((())))s.

Starburst

Hang in there, LV. Waiting is never easy, it's ok to feel worried and scared. You can get through this....without a kick up the bum but with a big HUG from your AC friends. xx

Slosh

Another day nearer hearing back. More hugs on their way and fingers crossed for some good news soon. You deserve it.