Light at the End of the Tunnel?

tillytop

First, I would like to say a huge "thank you" for the continued support from people while I have been "off air" so to speak. I can't tell you how much it has meant to me.

This post is about sharing some better news and to say that I feel that someone has turned on a (low wattage energy saving ) light somewhere in the vicinity of the end of my tunnel.

Although physical healthwise things are more complicated than they were and, if I am honest, really not good at all I am starting to feel more able to cope. Why? Because, quite by accident, I have found a brilliant GP who, in the past few weeks has given me more help and support than I have had from anyone in the medical profession in the 16 years since developing RA. He has rheumatology experience which is a real bonus so he understands that RA is not just confined to the joints. His term for RA is "rheumatoid disease" in recognition of the fact that it can encompass so many parts of the body and his view is that nearly everything which is happening to me is RA related. This actually makes me feel better because I don't feel it is "yet another thing" each time something new or different crops up. I have also found a real "ally" in the rheumatology department (one of the specialist nurses) who is doing a brilliant job of liasing between specialists at the moment so that one particular issue is being looked at as part of the bigger picture.

Physically, I am waiting for a CT scan of my lungs to determine whether my ongoing breathlessness is (as I suspect) a really entrenched infection which has been masked by the Rituximab, or whether (as my GP likes to think :roll: ) is is actually some form of rheuamatoid lung disease. Unfortunately while that is going on, I can't have any more Rituximab and it is definitely wearing off now. Apparently I can't have a steroid infusion in the interim either until infection has been ruled out, so things are certainly going to get a bit hairy over the next few weeks.

My new GP has also listened seriously to my concerns about my ongoing chest pains - and says that any chest pain in RA needs to be investigated because of the known higher risk of heart disease. So currently I have an angina spray to try when the chest pains occur, to see whether or not it helps. If not, apparently it is likely to be related to the other lung stuff so that would be one thing off the list eh?

I am also really looking forward to my forthcoming week of physio and hydro - assuming the hot flushes can be controlled well enough for me to be able to go - and the timing couldn't be better really, given that the Rituximab is wearing off.

So all in all, things are, if not better, then better managed, which certainly has made a big difference to my ability to cope.

Finally - to any new people who have read this far - I thought twice about mentioning RA related lung and heart problems in case I worried anyone. But please be reassured that I have had RA for many years now and that my RA was diagnosed early on as aggressive, erosive disease with a bad prognosis. And the kind of problems I am now having do not affect everyone.

Thanks again, lovely peeps.

Tillyxxx

stickywicket

I am so pleased you've found a sympathetic GP, Tilly. They are worth their weight in gold and you have had so much to put up with you really deserve one. I guess it's difficult to work out exactly what outcome one would hope for but my own gut feeling is that, once you can name the beast, you can cope with it. I hope it all goes well for you.

Wonkylegs

HI Tilly,

Wonky here as PA again

These are Cris's words:

Hi Tilly, I'm glad there's some good news in this for you, and that you've found a good doctor because they are worth their weight in gold, as we all know!

I really hope that they can get on top of the infection and the lung problem quickly.

All I can say is that I'm always here for you, never forget that pit is capped ...... and Cornish caps never break

the deer is already on his way, so sending the sheep with more tea, nudges, hugs and CDM.

(this next bit is typed under duress!!!) ..... I want to thank Wonky for her brilliant PA-ing and I have insisted she writes it

Cris xxxxx

Wonkylegs

Hi Tilly.

tis me this time honest

I'm so glad to read such a positive post from you, despite such a lot going on for you.

I know that having lots of things on the go at once is incredibly draining and frustrating, but you sound like you've got a really great way of thinking about it at the moment - thank you for sharing it, because I think it can show me a different way of thinking about what's going on for me just now.

thinking of you and I'm so pleased that you shared this positive post with us all.

hugs (((()))))

WOnky xxxxxx

CJHunter

Hi Tilly, Thank you for sharing this with us.
I, for one realy apprechiate your openess and willingness to share this at a difficult time.

It is great that u have found two forms of support in the medical proffession, its just a shame they all cant be that way.

Take care and all the best.

ooh,one last thing..., have they ruled out costrochondritis causing the chest pain, when i had this they thought i was having heart probs so thought would mention it.

tillytop

Thank you all for your kind words. I really appreciate it.

Sticky - I think you have hit the nail on the head in terms of "naming the beast". I have always found things easier to deal with once I know what I AM dealing with (if that makes sense).

Cris - thanks so much for taking the time to reply when things are so very tough for you. And for the reminder of just how tough those cornish caps are Good job too I reckon eh? Deer already on the way back and have just restocked the sheep and sent them on their way with love (())s, and more tea and CDM.

Wonky - thank you so much for posting for Cris - and then again as you! You are so right that having lots going on (as so many of us do) is draining and frustrating. You have obviously got lots going on too but I am pleased that what I said may have helped even a little bit.

Claire - thanks for your post and for your suggestion about chostro-wotsit. I will definitely look up about that and mention it to the GP if the symptoms seem to fit with mine. Thanks.

Thanks again lovely peeps.

Tillyxxx

traluvie

Hi Tilly,

You definately have a lot going on, but it is so refreshing to hear that you have an understanding GP, makes all the difference..Sounds like they will support you all the way and is determined to get to the bottom of things..I wish you all the best and hopefully soon you can have some more answers and they will be able to treat you accordingly,Let us know how you get on luvie, am thinking of you..x

((((((((((X))))))))))

tillytop

Thank you so much for your kind words Traluvie.

Love Tillyxxx

salamander

Hi Tilly, so good to hear you've got some people on your side. It really helps.
I'm aware of the chest/lung thing and am waiting to see a chest specialist myself and have had to come off Cimzia, like you. Things are hairy already for me but I know it won't last forever. It's so much better to get the right tests done before you continue. I hope the arthritis behaves in the meantime!
xx

julie47

ohhhh tilly I am pleased that your doctor is a good one and that Arthritis is his topic.
It is great news that he is putting you forward for all these tests and pretty soon you will be seeing not a low energy light but a full blown stadium of lights at the end of that tunnel.

Take care
Love & Hugs (((((((((()))))))
From a juliepf who is hopping with joy.

frogmorton

Hi Tilly

I am so pleased that you have at last found a good and knowledgable GP Tilly about time and you so deserve a bit of luck

I followed a locum GP to his final practise because he is intersted in arthritis so l know how brilliant it is when you do find someone to help you. (at his suggestion!)

I too hope the physio and hydro will be a help and those darn flushes allow you to go.

Love and HUGE hugs

Toni xx

suzygirl

Hi Tilly, it is so great to hear from you. You have been in my thoughts but I haven't wanted to bombard you with Pm's. Your new gp sounds a treasure and your specialist nurse.

Lets hope they can start to identify what the real problem is and then treat it. I am glad you are feeling more bale to cope as well, that is half the battle.

How typical of you, not to want to worry anyone either. My heart is already damaged due to my illness and I have high bp, I am restricted in activities due to this. So I do think you can't be too careful, I was fobbed off for ages, before I was taken seriously as I was considered 'too young'. Unfortunately these autoimmune beasties can affect anywhere and do in some cases, but not all.

You so deserve a break and some good care.

(((hugs)))