So disappointed and frustrated : (

suzygirl

Hi all

I am feeling very down. I am not sure I can even explain this to you properly. My gp called me back yesterday afternoon and said she had reviewed my notes. She highlighted letters from 2 rheumys I saw who were excellent and on the ball. I have had all the necessary tests and due to certain positive antibody results (lupus related), I don't qualify for a referral.

Apparently if she sent a letter with all my test results and letters the other hospital would say it has all been done. She wants me to and I quote 'stick my foot down', demand to see my original consultant and push for proper treatment. My next flare, I am to ring the rheumy nurse and demand to see the original consultant and no one else. Then I have to tell him to give me proper meds. :shock:

The original consultant was working his way to a diagnosis, but then I got lost in the system and his notes and bloods are that far back, no one reads them.

It is all just so

I am fed up of it all. Doesn't help I have sinusitis and am feeling rough. What do I do now?? I just feel like giving up. Can't see the point and can't be bothered to fight the system.

I hate to ask, and I know its quieter over the weekends, but I could really use some support. I just feel lost and left alone to deal with something, I don't want.

stickywicket

No. No. NO, Suztgirl!!! You will not give up! We won't let you.

You must feel so deflated, especially when yesterday's news seemed so good. But this is not all bad. The two rheumatologists you saw were 'excellent and on th ball'. Your GP wants you to 'stick your foot down' which suggests that she is on your side and will back you in what you do.

Of course you don't feel up to it right now. Give yourself a bit of space to take things in and recover and also recover from the sinusitis which debilitates everything and makes you feel too tired and deflated to bother.

Give it a few days. Then fight, fight, fight. Your GP's with you. We're with you. This can be done and it's worth doing.

scozzie

Keep your chin up Suztgirl and stick to em like the doc said, as Stickey said the GP's on your side!!!

skezier

Hi Suzy,

Flower you have got my support weekend or not.

I think your feeling like I did when they first used the words palliative care? Like nothing will ever change and you will just rot?

You wont cus the fight will come back and the original one maybe is worth seeing and pleading your case with?

Hang in there flower and so know (in my own way) how your feeling... its horrible but you can find the fight and we can help you find it. ((((( ))))), a cuppa and buckets of strength and stamina. Love Cris xxx

debbien

Hi Suzi girl
I am no expert with the condition as you may have guessed but i would say to you dont loose faith you have been very supportive and saved me from loosing it! i feel it is your turn to get the support from anyone that can help so write a list of things to do to bring youself back on the right track. I have been doing this for 2 years and honestly it does feel like you are banging your head against the wall, however you have your GP to support you mine just says "what do you want me to do?" and of course i have no idea i was hoping the gp would tell me and i think in your case your gp is telling you so at least its a start. Find the strength from all the support of everyone on here and as someon else says f"ight fight fight, dont give up"!
Debbie

Poppyg1rl

Oh Suzygirl I'm so sorry, whichever way you look at it this is quite an about turn.
However, I'm quite positive things happen for a reason, your GP is backing you and telling you to 'put your foot down' all well and good, how about asking the GP if they could write a letter stating that more should be done for you or something along those lines? you know the old saying 'don't ask don't get'? might be worth a try honey.
If you can, rest and recoup from this experience and then when you're up to it, start off with the GP, giving the Rheumy nurse a call and asking for her help maybe? Whatever happens know that we are all with you 100 percent pm me if you want to chat honey
Take care X

barbara12

Oh Suzy
We are all behind you, what you need now is some quality sleep ..if you can get some...then tomorrow is another day...we all go threw these horrible patches...but with everyone on here we do get there.
Write down a list of things to do...more important ones first...take your time..and recheck it...
And please let us know how you get on..

suzygirl

Oh guys, you have bought a tear to my eye. I logged on not expecting any replies, you have overwhelmed me with your support.

Interesting that you all say the gp is on my side, I hadn't looked at it like that. I am glad I shared, its good to get other view points. Still a long way to go, But I have a smile, which I didn't have 5 mins ago.

Thanks all, you are so great x

lalla

Hi Suzy so sorry you are feeling so low Im sure your Rheumy nurse can take the lead for you ,tell her you really, need her help to liase with the consultants, GP etc and ask her to explain everything to you. Hope you can sleep and feel rested (((((SUZY)))) Take care Linda

traluvie

Hi Suzy..

The others have said it all but i just wanted to send you hugs(((((X))))) and say we are all here to support you..Don't give up..x

valval

it does not matter wether it the weekend or a week day we are with you on this do not feel alone you have a great gp and us what more do you need in your corner i know it not easy but stay with it you will get there ((())) val

stickywicket

So now it's not just you, it's you & your army! But take time to get your sinusitis sorted so's you feel strong. I think this could work out well.

julie47

suzy, just dropping in to say keep your chin up and keep fighting,

and I hope the sinus trouble is better soon

Take care
Juliepf x

frogmorton

My Poor Dear Suzy :sad:

l am late getting on myself due to a manic week, but have read this from cover to beginning to end.

First of all weekend or no weekend we are here for each other lass and you are no exception to the rule

Your GP is definitely 'on your side' as it reads definitely sounds that way.

Rest up get, over the sinus issues, recoup some energy (you can have some of mine - not the best quality, but you are welcome ) and then the battle continues

Love and HUGS

Toni xx

suzygirl

You know you are all so great, I struggled to share this latest twist of my journey. When something really hurts I tend to keep quiet, but I forced myself to post and I am so glad I did.

I don't feel so alone and lost, with all your support. I have a long way to go, and I know it won't be easy, but you have given me the encouragement I needed to keep going. I will take it one day at a time.

Right no, need to get over this bug, glad I have the antibiotics, its gone to my chest now. It is far too hot for me at the moment, I hate to moan, but yuck!! I am supposed to be going to a funeral today, but between my infection and the heat am not sure I will make it, which is frustrating.

However, I am so thankful for your support. It really does mean a lot.

liesa

Hi Suzygirl
cant offer you much as im feeling crap myself today, just wanted to send hugs xxx ((((( ))))

mig

With you Suzygirl hope you feel better soon .Mig

nanasue

Hi Suzy,
Can't really add anyhting to what everyone else has said, I agree with it all. Your Gp and the rheumy nurse should help you to get the help you need and don't forget we're all here fighting your corner for you and always ready to listen. Sending (((()))) and hoping the anti-biotics soon start to make you feel better,

Sue x

skezier

Hi Suzy,

Just leaving a (((((((((( ))))))))))) and a hope your feeling a little more hopeful today. Love and a sachet Cris xx