And a date - just not the one we were hoping for

Things had got a little off the rails and I had to call the 'Patient Advocacy' department at the hospital.  Within a week, Kirstin got a call from Dr A's (the neurosurgeon) office with a date.  Alas, it is June 8th.  That's two months away, and definitely not the March/April we were told originally.  The reason is that now there will be two surgeons present, Dr A and an unknown orthopaedic surgeon.  We haven't been told why the change in plan, nor why what new information could have triggered this.

But in any case.

Through a great connection with a woman that Kirstin used to tutor (hi Merce!), we got a new rheumatologist (the old one prevaricated against have neck x-rays done for over 12 months, and I think they should be struck off for incompetence.  But I digress...).  The first appoint to see her (Dr M) was set for.... July!  That was clearly not going to work, so with the help of the local Arthritis Society, an appointment was made available immediately.  We saw the new doc for the first time yesterday.

Kirstin was really happy with Dr M.  She was listened to, took careful notes, asked the right questions, poked and prodded (you'd be surprised how many don't bother) and had some helpful pieces of information to share.  One of them was that Kirstin really only needs to come off her main RA drugs two weeks to a month prior to the surgery.  Alas, the neurosurgeon said she should come off in January.  So Kirstin has been off her main meds for three months now, and it will be five months by the date of the knife.  Grim.  There isn't enough time left to merit starting then stopping them again, so that is quite frustrating.

Having a date that (we trust) is fixed is good though.

In other news:  some dear friends in Australia sent us a prayer quilt.  This was quite lovely to receive.  My mum has been cooking up a storm and our freezer is full of good things that are so helpful when we are too tired to cook.  And we've got a 17 year old living with us for a few months.  She's got a tricky family situation, and we've got a big house.  Just because life can never be boring!

Kirstin appreciates the emails she gets sent but doesn't have tons of energy to reply (the morphine makes her quite funny when she does, though!).  Nevertheless, as long as you don't mind writing into the ether, please do tell us of your lives via email - it's a great distraction for her.

No news is no news

Just a quick update to say that nothing much has changed.  Surgery is still not scheduled, but the obvious frustration of our surgeon's office led to my question as to how I can apply pressure to the scheduling people.  I spoke with the 'patient advocacy' department last week, and made a semi-official complaint.  There should be some news for us this week.

The lack of life for Kirstin is taking its toll.  Morphine, lack of mental acuity, frustration, all on the increase.

Hopefully better news next week.