Back from consultant

Bookseverywhere

I had an appointment today with my consultant. Because of my remote location, it takes about two hours to drive to the hospital where my appointment was (it would take longer if I had had to go to the hospital in Inverness). So in effect a hospital appointment means a whole day out from work/home.

However, he is happy with my progress. He has upped the dosage of one of my pills but, with the exception of steroids, the rest are to remain the same. He wants me to continue to reduce my steroids by 1gm a month (I am currently down to 7gm), something I am happy to do because I really do not want to be on steroids for the rest of my life. If any reduction leads to a large increase in pain, then I am sure my GP will tell me to increase the dosage again.

My own discomfort at the moment is in my left wrist, hand and thumb (and I am left handed) and my left ankle and toes. If it stays that way, then it is certainly manageable.

When I got to the hospital, I decided to leave my walking stick in the car, as it was only a short walk from the car park to Outpatients. Although I will always have my walking stick near, if I can manage without it I will do.

I did think he was going to do some more X-rays today, but apparently not. Instead he is going to make an appointment for X-rays in the near future - at either Dingwall or Inverness. Pity it couldn't have all been done in one go, given the distance (and the horrendous cost of fuel in the Highlands).

Best wishes,
Kevin.

barbara12

Hi Kevin
I am so glad they are reducing your steroids, I suppose its just finding the right balance, like you say at least you can up them if the pain gets to much.
What a drive you have to hospital, my goodness bet you are tired after all that, I only use one stick at minute, but like you I do try and do without it.
I wish you well with your treatment, and hopefully your hands will improve very soon.
Barbara x

dreamdaisy

Trek to hospital v quality of life - hmmmmm, the second wins. I reckon you life in a lovely part of the world, Bookseverywhere, how often do you have to go to the hospital?

So, on the whole, it's not too bad for you at the moment: obviously you want things to be better but you sound as tho you are coping OK with it all, the discomfort is manageable, and if you can walk some distance sans sticks well, how fab! Keep on with the steroid reduction, as you know I am doing the same, I have another week on 12.5 then I think I will drop to 11. They are fabulous little pills but . . . . . .

I wish you well - and please send my regards to Stephen, I know things are very tough for you both at the moment and you are both in my thoughts. DD

Rictina

I wish you well with your steroid reduction .

Take care.

Rictina.

speedalong

Hi, the NHS doesn't think about patient waiting/travelling etc ....

Good luck with the med change.

Speedy

stickywicket

Kevin, I'm so glad it seems to have gone well for you today. I think I'd want good news if I was traveling so far. Good that you managed without the stick too. I love walking on hospital corridors (I'm a sad person) as they're so flat & smooth I can just go for it.

Sounds like you're doing a great job with the steroids. Have you read DD's thread on steroid reduction? Someone posted something about how to solve the 'hitting the wall' difficulty when you get down to 5mgs per day. I'd never known this was an acknowledged phenomenon but did always find I stuck at 5.

Any chance of your seeing the northern lights up there these next few days? I'd love to see them. Came very close 2 years ago in a plane over Minneapolis.

Keep plugging away. You sound o be doing great.

Bookseverywhere

Thanks for all your responses and good wishes. Yes, DD, the quality of life up here is wonderful, and the distance to anywhere is one of the few downsides. Also, staff at both hospitals - Dingwall and Inverness - are aware of the distance and normally ensure any appointments take into account the journey time.

Stickywicket, We regularly see the Northern Lights up here. A few years ago I wrote a short poem about them that was later published. I think I might post it in the poetry section.

Today I will taking much of the day off to watch the opening match in the cricket world cup...

Best wishes,
Kevin.

stickywicket

Bookseverywhere wrote:

We regularly see the Northern Lights up here. A few years ago I wrote a short poem about them that was later published. I think I might post it in the poetry section.
Kevin.

Please do. I'm as green as the northern lights with envy.

frogmorton

Hi Bookseverywhere

Sounds liek an ok appt all round really if you take into account the costs in time and fuel of course!!

Good luck with the reduction in the steroids as you say slowly slowy and you stand a better chance of succeeding in that.

Sounds as though you are coping really well at the moment - long may it last

Love

toni xx