Long absence - sorry this is a long explanation

chicara

Hi everyone,

It has been a long time since I last posted, apart from my earlier post today to the helpline team which some of you may have seen.

I really have been having a hard time of it since before Christmas. I was feeling really ill most days, swollen, inflamed joints, rash, fevers (all typical of a Still's flare). I also had been struggling with a cough for over 12 months, but docs kept saying my chest was clear, so put it down to smoking (now a thing of the past). The beginning of May I thought I'd pulled a muscle in my back, after a week it was getting no better and one morning I woke at 3 am really struggling for breath and feeling lousy. Told myself I was just panicking and woke hubby (no mean feat when he is profoundly deaf and hearing aids on in bed) and got him to keep me company and calm. Needless to say he was really worried and wanted to call an ambulance to which I told him not to be daft I couldn't call an ambulance for a pulled muscle. I did however agree to go see one of the GP's that morning who listened to my chest through a big thick winter jumper and also declared I'd pulled a muscle. By 10 o'clock that night I gave in and let hubby call an ambulance, paramedics immediately put me on oxygen, put in a cannula and gave me morphine and whisked me off to A & E.

I spent two weeks in hospital diagnosed with right parapneumonic collection and empyema. After ten days of intravenous antibiotics and having a chest drain, things were getting worse not better so I was scheduled for surgery. However I then developed hypertension and signs of sepsis, so the surgery was brought forward as an emergency op - right thoracotomy and right decortication, followed by a night in HDU, with catheter in situ, central line, two cannulas in my arm, a morphine PCA and two units of blood and two chest drains.

Since discharge from hospital, I have had infection in my left lung, (they operated on the right) post operative empyema, and needed numerous antibiotics and a nebuliser to help me breath. I've also had infection in the wound, an infected saliva gland (looked like I had mumps) which is thought to be due to a stone in the gland and then to top everything off yesterday I had a seizure. Never had one in my life before but GP thinks I should now be referred to have that investigated. In the last six months I've been seen by rheumatologist, dietician, haematologist, cardio-thoracics and am now waiting for referrals to ENT and neurology!

With my Still's not under control meaning my joints are really bad, my lung still not properly clear or healed, stones in my saliva gland and a seizure, I have just about had my fill this year and am beginning to wonder what's going to be the next challenge.

If anyone is still actually reading by this point thank you and sorry it is such a long post. So much has happened I just needed to put it all down - thanks. Still I may not have great health and it may be challenging at the moment, but I have got the most wonderful family and friends, have a nice home, food, hobbies, the wonder of the internet and all the information, support and friends that brings - all in all - life is good

Hope everyone manages a reasonable nights rest and wake to what passes a good day.

Take care all

Chicara

rugbygirl

Hi

I am so sorry to read your story. I hope that things start to improve for you and you manage to find the strength to fight until you have the results that you require as well as the answers.

Just want to send you a bucket of hugs

constable

My goodness, I think you not only have had your fill of it, you've had everyone elses as well. You have every right to have a moan after what you've been through.

I really do wish you well and hope that everything gets back to a normal state for you.

I am sending you big hugs of comfort and shall be thinking of you.


Karen xx

mig

KEEP ON FIGHTING WE ARE ALL WITH YOU.MIG

donjohn

Hello Chicara

I am sorry to hear about your condition. I hope that things improve for you.

Best wishes

Donjohn

dreamdaisy

Blimey o'Riley. Words fail me. You concentrate on getting as well as you can, yes? We will all still be here, I can promise you that. Being arthritic none of us tend to go very far! Take care, I wish you well and keep in touch. DD

barbara12

Hi Chicara
OMG how awful for you, I cant even imagine how awful it must have been going through all that...it just goes to show how we try to put off going to hospital...nobody likes that bit.
I am just glad you have been able to write all this, it must have taken some weight off your shoulders, Im a great believer in talking, it really does help.
We are always here if you need us, and please let us know how you are doing.
Wishing you well with everything

julie47

chicara

I am lost for words......sorry you have been so very poorly and I hope things start to improve for you soon.

Take care
Juliepf x

Poppyg1rl

Hi Chicara,
You've been through so much, and yet you sound so positive, I applaud your attitude, I always feel it's better to look at the glass as half full I'm sending you healing hugs and please, please keep being positive you're a fighter we are all amazed at your strength and courage Xxx

lilyflower

Hi Chicara, bless you, you have been through the mill and can still manage to sound cheer!. Hope you start to feel better soon.
Bigs hugs coming you way and keep smiling.
Jackie

hileena111

Hi Chicara
What a time you have had.......and you sound so positive....good for you.
Like Barbara...I believe in talking and that it is good therapy so I hope writing all that has helped a bit.....and reading the replies You rest and do whatever you need to and as DD says we are here so anytime you need us......just post.
Love and ((((((((()))))))))))
Hileena

chicara

Thank you so much to everyone for all the wonderful replies. I wish I could post an individual reply to each and everyone of you expressing my appreciation that you took the time and effort to reply to my post and how much all your support means. But I'm sorry my hands and fingers just wouldn't cope at the moment so I hope you will all accept this one thanks to you all.

I wish I could reply to some of the other threads too but with one thing and another I find it difficult at the moment. I will try and pop in every few days to say hello but I really am having to take each day as it comes at the moment so please forgive me if I'm not around as much as I would like, but I will do my best.

Sending healing thoughts, hugs and wishes to everyone.

Take care all
Chicara

hileena111

Hi Chicara
Dont worry.......we know you are about and will pop on if you can.
We are about here most of the time
So hear you when we hear you

Love
Hileena