Support for Tillytop

lululu

It's a new day tilly and I hope you are feeling a little refreshed this morning. I know it must have been draining for you yesterday so thought a new thread would be good for you. I do hope you are feeling a little better, only you know the details and that is allright so only you know how you are going to go forward but you have to try to make things a little easier for you. Try to talk to the profesionals tilly think about having achat with PALLS you have nothing to loose and so much to gain.

mig

thinking good thoughts for you.((((()))) Mig

stickywicket

Good idea, lululu. New day, new thread and, hopefully, new start. I am thinking of you, Tilly. I hope you and Mr Tilly can manage a good weekend.

liesa

Thinking of you Tilly xx

dachshund

Hi Tillytop.
i hope you will soon feel better.you try and have a lovely
weekend.
take care.
joan xx

suzygirl

Tilly, wishing you a wonderful weekend.

bubbadog

I hope this is a new start for you tilly, you deserve it your so kind and funny and you've brought a smile to my face and made me laugh many times and by god have I needed to do that for a long time. You always think of others before your self, so it's time we pay you back.
You take it easy and as Lulu said chat to the doc's about how you go forward from now and you know we're all here for you to suport you, and if you want to talk to any of us you can.
So funny sweet Tilly you get better soon and I hope you & Mr Tilly have a good weekend! Oh and I hope Mr Tilly has brought you lots of grapes!!
Big soft (((HUGS))) from me & Bubba.

PatriciaH

Love to you Tilly. With Mr Tilly by your side all will be well eventually. You will see Take the greatest care.....x

julie47

Tilly, sending fresh Hugs for a fresh thread (((((((((((((()))))))))))))) and hoping that today you are feeling much better

Love Juliepf xx

tillytop

Oh thankyou so much Lululu for starting this thread. That was really lovely of you.

Today has been a GOOD day - we have been out and had a lovely day - and I am feeling much brighter.

I can't thank you all enough for your wonderful support - I have been really touched by your kindness and your wise words.

Thanks again.

Tillyxxx

elnafinn

Dear Tilly

It is such a relief to read today was much better for you. Long may that continue. Do call in and share with us your bad, dark days as well as your happy days. It does help to write it all down. We are here for you.

I so hope tomorrow is a good day for you too.

Gentle hugs
Elna x

suzygirl

Hi Tilly, glad to hear you had a good day out. I hope you have a nice day today.

(((hugs)))

mig

Glad you are a little brighter today.Mig

valval

you will have good days and bad days but remember you will always have us good luck val

lululu

Tilly now, while you are feeling a little better is the time to seek out help, please think about it. Emotionally you feel you are a little better but the practical stuff is still there. Even just a little help goes a long way sometimes.

tillytop

Thank you, Thank you Thank you all for your continued support. I am feeling much brighter again today and, although I feel it's a bit of a "precarious reprieve" I do, for the moment feel that I have regained a bit of my perspective - thanks, in no small part, to your support.

Love Tillyxxx

dachshund

Hi Tillytop.
i'm pleased you are feeling a bit better. you take care and dont over do things.
((((((((Tillytop))))))))
joan xx

stickywicket

Hello again, Tilly. I, too, am pleased things seem a little brighter and I hope the trend continues once the weekend is past. If not, you know where we are. Please don't 'do another ostrich' :P although, I admit, it takes one to know one.(())

dorcas

Hello Tilly

Sorry I missed your previous thread :oops: ... I haven't been around much... :roll:
I had a read back and see what a hard time of it you've been having. As other peeps have said.. you are such a supportive, kind and caring person .. one of the best!

please know I am thinking of you and sending you lots of positive thoughts and much love,

Iris xx

emsjane

Really pleased to hear that Tilly, your thread was very worrying the other day! Glad to see you are feeling more positive! Keep posting x

stickywicket

Hello again, Tilly. It's the start of a new week and a lovely sunny - if cold - one here. How are things where you are and, more importantly, how are you? I am thinking of you.

tillytop

Thankyou once again for your kind words and continued support. I really do appreciate it.

I am doing ok today thanks Sticky and enjoying the sunshine even though, as you say, it's pretty chilly.

Hope everyone else has sunshine too today cos I understand the rest of the week is meant to be pretty wet everywhere.

Tillyxxx

stickywicket

Hello Tilly. How are things with you? (And please don't say they're OK if they're not :roll: ) No-one expects to go from where you were to Pollyanna in one giant leap. I kind of hope things are a bit better but, even more than that, I hope you'll feel able to tell it like it is. Have you made any decision yet about the heart tests? How's stuff with your Mum? Sorry, I didn't mean it to sound like cross-examination. ((()))

dachshund

Hi Tillytop.
i hope you are having a good day today and not in too much pain.
take care.
joan xx

bounce

Hi Tilly,

Hope you are having an easier time now, and are feeling more your old self,

Just to let you know still thinking good thoughts for you.

Hope you have sorted out another day out, :-D

Julie

tillytop

Thank you Julie, Joan and Sticky for your posts.

You ask how I really am Sticky - well desperately trying to pretend it's all ok again when it's really not.

Yesterday, although I was struggling physically, I felt better "head-wise" but that's all gone to pot today having just spoken to the rheumatology helpline.

Without going into all the details, suffice to say that I just continue to feel so on my own with all the RA complications and feel as if I am sitting at the bottom of a black pit screaming for help and nobody in the medical profession is listening. The r. nurse is going to liaise with the chest clinic to see what their latest concerns are and to check with the rheumatology consultant about whether it's ok to go ahead with the Rituximab which is fine. But I tried to explain how difficult it had been because of the conflicting information I keep getting from the chest clinic and I asked if she would let me know what she found out but the answer was "you need to speak to the chest clinic about this".

I then sought clarity on the conflicing advice I have had about the impact of the Rituximab infusions on the timing of my eye surgery, having been told first by the r consultant that the timing wasn't an issue, then by the r nurse who booked the Ritux infusions, that I would need to delay the Ritux til after the eye surgery. On that basis I said I would rather delay the eye surgery but when I asked how long I would need to delay it, I was told "speak to the eye hospital". Today, the r nurse asked me what was involved in the eye surgery (about which I have no idea) and said that, although she would check with the rheumatologist, they really needed details of the infection rates etc to help make a decision. In other words, it's up to me somehow, to try to get that information from the eye hospital.

The eye hospital are notoriously bad at sending out letters after appointments and impossible to speak to on the phone. They just have answerphones on every number and nobody every returns the calls. So I phoned the GP to see if they had in fact had a letter from the eye hospital following my appt at the end of February - but nothing. So now I need to try to contact PALS to help me to get the information. They were great before when I couldn't get to speak to the eye hospital so hopefully they can help.

As I said before I am just so desperate for some help, or even some empathy from the r department in terms of the complexity and difficulties of what is going on. But there is no opportunity at clinic appts to talk to anyone except about the basic facts and all the r nurses seem to be interested in is DAS scores and blood test results. When I was at the hospital for two weeks before Christmas I asked and asked to talk to someone and the person who was flagged up as the best one to help me was too busy and eventually I saw, briefly, a very unsympathetic consultant who basically told me I was, understandably depressed, and to go and see my GP. And the r nurse who didn't have time to talk to me fowarded my details (with my permission) to the local National Rheumatoid Arthritis Society co-ordinator, thinking I guess that I could get my support from there. The NRAS lady phoned me and was really lovely but very keen that I paid to join NRAS if I was going to use their services and I didn't feel I could tell her that, having just renewed my AC membership, I couldn't afford to do that, so even that avenue was closed off to me.

I just feel so alone with all this, in medical terms - and so stupid for even trying to ask for help.

Rhetorical question - why does it all have to be so difficult?

Thanks for listening (again).

Tillyxxx