Tiring day with mixed emotions (long sorry)

[Guest guest]

Well today has been a very long day with very mixed emotions along

the way! But then I'm kind of getting used to that these days.....

Firstly my appointment with Mac went pretty well, with him being his

usual caring and humorous self and cheering me up as only he can. I

had more x-rays on my wrist but we can't really make any progress

until I've had my MRI scan, which Mac was rather annoyed I hadn't

had yet - so he promptly grabbed the phone and asked the MRI guys to

put me at the top of their list! I should be getting that very soon

now then and have to return to see Mac a week after it's done...so

hopefully we should be moving forward with that soon.

He is thrilled at how my shoulder is going, with it healing nicely,

rehabbing excellently and so far showing no signs of any

instability. It was lovely seeing the happiness in his face when he

saw how good it is going, I know the success of this procedure means

a huge amount to him too as it would have been very easy for him to

chicken out of such unpredictable surgery. He always has done his

very best for me though and the smile that lit up his face when I

thanked him for doing such a great job was worth every minute of the

post op pain I went through to get here! Because my arm is

progressing so well, Mac feels it would be fine for me to arrange my

stay with Prof now and is actually eager for that to happen for my

sake too. So tomorrow will be spent on the phone juggling my MRI

scan, appointment with Mac and dates for Prof B.

I talked to Mac about my knee, but as I expected he is " not touching

your bloody knees again " ! Mac really does hate my knees intensely

and in spite of my efforts to assure him otherwise, thanks to a very

mean spirited knee surgeon's lazy and misinformed opinion he still

blames himself for the mess my knee is in now. He's a very rare

breed is Mac, a surgeon with conscience who genuinely cares... but

it breaks my heart to see him hurting over this when his guilt is

unwarranted. There are many people along this sordid journey to a

diagnosis who have treated me badly and I bitterly blame - but Mac

is the one person I don't lay any blame too. His surgery hasn't

helped my knees sadly, but it certianly ahsn't caused the major

deformity issues I have now. He's the only guy who has always been

willing to try and help me and I know will give 100% for me

regardless... I adore this man, respect him fully and trust him with

my life. That's why it galls me so much to know he's one who feels

the pain while the really guilty parties sleep soundly at night

somehow.

Anyway, in spite of his personal feelings, Mac was still very

concerned about my dislocation, so got one of his team to examine

the knee for him. It's very swollen, still twisted and every time

the knee cap tracks it visually jumps out of the groove medially

too. He's advised me to keep it iced, rested and splinted until I

get to Leeds and hopefully they will be able to make suggestions on

what if anything can be done for this. I am hoping that Prof B and

his team will have some advice and perhaps referral power as I'm not

ready to just roll over and accept this is a lost cause yet. I think

Mac agrees with my sentiments too, as he very generously suggested

that if I get no joy in Leeds, he will look into referring me to

another knee specialist locally - which is something I appreciate as

he doesn't have to do that.

All in all, although we weren't able to achieve a lot directly, I am

quite satisfied form my appointment as I at least know the ball is

rolling on several things now. It's always nice to know you are at

least moving forward, even if you're not quite sure where you're

headed! At least I know I will have my wonderful Mac with me no

matter where my destination is though, which is a relief as it seems

it is going to be a very bumpy ride.

After my appt with Mac I was able to see a doctor about my ear who

confirmed I have an infection actually on my ear drum - so the

obligatory Amoxicillin has been wheeled out once more! Fingers

crossed they will do the trick, but I have to see my ENT specialist

for check up regardless. So it had been a rather long day and I was

already feeling rather tired, when I settled down to watch a little

TV again around 9pm. I should have known better than to try the

extreme sort again as yep, you've guessed I have done it again!

Somehow, just adjusting my position in bed I managed to sublux a

neck vertebrae rather spectacularly and noisily too. my neck

instantly went into an awful spasm and my throat and chin went numb,

causing a panicked run up to the ER yet again. The subluxed

vertebrae wont budge due to the spasm, so I am currently in a collar

and doped up to the eyeballs on pain killers and muscle relaxants in

the hope that will allow things to slip back into place.

I am starting to get pretty woozy headed now form all the drugs and

the tiredness catching up with me. I just hope that I can get some

sleep and by the time I awaken things are back in place. My biggest

worry though is that the muscles relaxant causing my other joints to

dislocate even more - as I could be spending most of the morning

relocating various body parts!

Well I have waffle don far too long again - sorry! Take care

everyone and know I'm thinking of you.

Love and hugs.....Jo

xx

[Guest guest]

Jo, I just don't know what to say to you, Sweetie, except that you

know we are all with you throughout this painful, long journey! I

feel so badly for you! Please hang in there!

Love Lana

> Well today has been a very long day with very mixed emotions along

> the way! But then I'm kind of getting used to that these days.....