Support for Tillytop

marrianne

I am so sorry Tillytop,I didnt post before because I felt so inadequate, I know you are much loved and have been endless in your support for others ,I hope someone can give you some answers soon if you could just put it all down for now just concentrate on today look after your self get back your strengh gather thought rest and just concentrate on close family o/h .... even if you miss appointments they will soon come to you then you can tell them how you are REALLY FEELING The first post you wrote on here if you could print it out and give it to someone who is involved in your treatment well how could they not fail to fight your corner you do need someone in the system with a bit of clout Tilly meanwhile you have all your friends on here old and new thinking of you Marrianne

bounce

Oh Tilly,

Im so so sorry to hear that all the parts of the NHS of which you are under are letting you down so badly, I cant believe that this can happen in this day and age.

I can only imagine how low you are feeling now after trying to get somewhere to liase everything so you know where you are going medication wise, getting back on, off, new stuff etc,

It seems like they give you the runaround if you dare to try to figure out where you are in all of this diabolical mess.

You have been let down so badly, you are struggling like hell, and there is no-one that can tell you what is going on properly, its always phone here phone there speak to A speak to B, its enough to give you severe depression, you are in the middle of no mans land and you just want to find the proper way out of the minefield, and they just keep you stuck in the middle of it.

No human being should be put through this, and the NHS forget at times that they are speaking to a person who is in a lot of pain and is desperate to sort things out into some kind of order with everything,

Just get it all down in writing whenever you need to, you are not alone, we are all part of the arthur family, I know Im not in as much trouble as you are Tilly, but I really can sympathise and lend any support I can possibly can,

You are a great lady, who does not need this kind of manure thrown at her. ( lol I was very polite there).

There are so many people on this forum that are rooting for you, and will help in any way we can, all I can do is chat to you via this forum, send hugs and all my best wishes for you. I just pray that you can soon have all of this resolved soon and they all get their act together.

skezier

Hi Tilly,

You know I so know where your coming form... though please remember you pit i capped and I have rope and a ladder if you have fallen into another one... will cap it as well as soon as your out.

i also know the feeling that you are alone with the ra, though for me its the pa and oa but the same thing what ever the underlying thing is.

Just ant to say though how ever much the medics mess you about and do nothing this lot are always here for you and that means your never alone. My one inst a pit its a cell.... I was able to imagine it having a door and now I only go in if the door stays open... Vissulistaion can sometimes so help as can counselling if you get a good person to council you.

Do you think that might help you? It did me but that's me and not you if you see what I mean and not everyone feels the benefits like I have.

You hang i there my friend and the Deer has the end of the ladder and isn't afriad to jump into pits with it.

Leaving g you a bucket of understanding, strength and fortitude as well as tea and a (((((((((( )))))))))) Cris xxx

mig

Oh Tilly my love i am so sorry that all this is going on ,i just wish i could help,i can only offer hugs(((()))) and warm thoughts. Mig

tillytop

Thank you all so much for your continued support and kind words.

Having slept all afternoon I feel a bit better about things. It does just all get too much sometimes doesn't it?

I did talk to PALS and within a couple of hours the eye hospital rang me and I was able to talk to an eye nurse about the eye surgery so I can feed that back to the rheumatology dept. It seems that the procedure is very straightforward, and that the risk of infection is negligible. In fact she said that there is more risk of infection from having the temporary tear duct plugs put in which I have had done several times with no problems. So it does sound as if that will not be impacted by the Rituximab in any way so I can either go ahead with it on the original appt date in June or, wait to see if the Rituximab helps with the eyes first if I choose. So that's one positive thing at least. I haven't fed that back to the rheumatology unit yet but I reckon that gives me a reason to ring them again if they don't call back about the chest stuff within a week or so.

Thanks again so much for being there for me - it really does help so much.

Love Tillyxx

PS: Cris I am very reassured to see the deer at the top of pit shaft, peering in at me with his rope and his ladder! Hoping I can climb out by myself though cos I wouldn't want him to have to come down for me!

skezier

Hi Tilly,

Glad that the eye people have reassured you and hopefully the rumo dept will take note and get some kind of help arranged for you as well.

I am not able to read so good juts now flower but son;t think I don;t care.

The Deer has the full potholing costume on and will come down to give you a nudge and some cdm... he said he wont eat it and I think I believe him. We could lower the owl box down as well as a precaution.

He has left the ladder and a nudge as well as the sheep who love the abseiling bit.

Seriously my friend you hang in there and just know you are not alone. Love and some ((((( ))))) and so many buckets of hopes. Cris xx

tillytop

Thank you so much Cris.

I am now sitting here chuckling at the abseiling/potholing menagerie up above and negotiating with the Deer about the CDM!

I know how much you are struggling at the moment Cris, with your eyes and everything else, so thank you so much for taking the time to post and to assemble the "rescue party". Thinking of you too Cris, lots.

Love Tillyxxx

Folara

Hi Tilly

I've not been on much lately and I'm sorry to hear you are having such a hard time.

Sending you big hugs and some positive mental attitude to keep you going.

Fols xx

tillytop

Thank you so much Fols. I really appreciate you taking the time to post cos I think you are struggling too.

Thinking of you.

Tillyxxx.

frogmorton

Oh Tilly

l am ashamed l didn't see this thread until today and had had no idea that you were suffering so much. I was being a bit wrapped up in my own stuff.

I have read it from beginning to end and can see things are beginning to improve for you.

Thank goodness for that because you of all people do not deserve to feel so bad.

LOve and hugs and a carrot for the deer a chirrup from D****cat

Toni xxx

stickywicket

Tilly, I'm really pleased you have something good to report. And well done for contacting PALS and making it happen. That's so difficult when you're down.

I have to tell you that I have this image of the pit and the deer and the rope and it's all merging in my head with my little grandson's Winnie the Pooh DVD where they all end up in the pit they've dug for the 'Baksun' and then climb out using the letters from their own story. I hope you can do the same. You seem to have made a good start.

tillytop

Thanks peeps.

Just come in to an answerphone msg from r nurse to say she has spoken to the consultant and I can go ahead with my Ritux infusions at the end of May. No mention of lung or eye stuff but don't know what I was expecting there really.

So just going to try to forget about it all for a few weeks now until my infusions and see if I can use that time to get my head together. Only decision I have to make is whether to delay the eye op to give the Ritux an opportunity to help the Sjogrens first. In the absence of any medical help or guidance will just have to try to decide myself and hope I make the right decision.

Thanks again.

Tillyxxx

Numptydumpty

Dear Tilly, I really do feel for you. That's good news about the infusion though, isn't it ?
I hope everything works out for you. You deserve some good luck now.
Thinking of you, and wishing you well,
Numpty

skezier

Hi Tilly,

Glad she rang but could the eye people advise you at all since the rumo isn;t? Its a hard thing to decide your self but will be with you what ever you decide.

The Deer said he did give you the cdm.... but.... Alba said she likes tea so I think your cuppa may have disappeared in the abseil..... will lower the owl box, he wont mind being down there though he might need to be told when sunset has come.

You hang in there and they did leave the ladder if you need it.... I know it was made by sheep from wool but it should hold. Do you want me to test it out first?

Leaving provisions iin the box and have lowered it in and a ((((( ))))) Cris xxx

bounce

Tilly,

that is great news, you are now getting somewhere and now you can see the light of day,

it shows you are such a strong lady putting up with this stuff, and now things are moving, im so happy for you.

I know you have lots of decisions to do, but you will decide right on anything,

stay strong, enough time to get your head round things, and hopefully you will be able to relax a bit, and just get things straightened out, see sometimes you have to kick butt, and you are the lady to do it. :-D

lots of love and hugs

Julie

marrianne

Tilly,At last you are getting through what must have felt like swimming through treacle at times ........ rest regroup get stronger good idea leave the eyes they may improve with infusion .Tilly I wish you very well .and when your stronger you will be happy with Mum again to just for now you cope with out to much emotional stuff Marrianne

stickywicket

tillytop wrote:

So just going to try to forget about it all for a few weeks now until my infusions and see if I can use that time to get my head together.

Definitely a good idea, Tilly, though I think skezier has a point. If it were me, I think I'd take two weeks out completely then chalk up a day on the calendar when I'd to decide whether to consult the eye people or not. After that, I'd try to decide one way or the other and make myself stick to it so I didn't have to think about it again.

Things are moving though and that's good. ((()))

Wonkylegs

Hi Tilly

wanted to add my very best wishes to those already on here, along with an apology for being so tardy in doing so.

hang in there, and keep talking about how you feel - to whoever will listen - as that really does help in the bad times.

hugs ((((())))))
WOnky xxx

skezier

Hi Tilly,

Just hauling up the owl box to restock it while he is out flying about. The Deer has donned his pj's and is sleeping with you tonight. He has got his best smoking jacket for the morning so you don;t need to worry at his 'I love Sushi' pj's... but of a shock to see first thing.

Leaving ((((( ))))) and a bucket of fortitude, stamina and hopes Cris xxx

traluvie

Hi Tilly just wanted to offer you some support and gentloe hugs ((()))

Chinup

Dear Tilly

Sending (((((gentle hugs))))) and hope all goes well with the infusion xxxxxx

Diane (chinup)

lululu

Hi Tilly I just looked in to see how you are doing, I am pleased to see you seem to be a little better, well done - take it easy.

stickywicket

Morning Tilly. Just a few more from me. ((()))

tillytop

Thanks again all so much.

Really bad day today - apart from hurting I am struggling with what appears to be another bout of narcolepsy - not anything like as bad as before but unpleasant enough and a tad frightening to say the least. Needless to say head not in a good place either.

Tillyxxx

Numptydumpty

Oh Tilly, I am sorry things are bad again, just when they seemed to be improving.
I wish there was something I could do or say to help you.
I am thinking of you, and wishing you well.
Numpty