Moanalogue

Had a great holiday but realised that for now until the RA is back under control my camping days are over!!! I had two nights of no sleep in the tent. Beautiful spot up the north coast but of course Boxing Day it rained and the combination of flaring and cold, on a blow up bed in a tent I just HURT BIG time!

I lasted 2 nights then luckily moved in with a friend's friend who lives nearby and abandonned my poor DH to the kids, the wet and the tent!!! We had 3 families camping side by side and a family living close by so we went there on their decking for meals etc. So we wern't completely soggy all the time. Day 3 the sun came out and we made it to the beach. It was great being with such hoardes, lots of laughter, lots of food, lots of children. Good energy.

Came back to Sydney for NY's eve, watched the fireworks from a vantage point overlooking the Harbour Bridge with another old friend and her son. Then NY's day headed south to stay with friends down at Austinmeer. Truely magical spot, glorious views and comfortable beds!!! They don't have kids but managed to survive our mayhem until yesterday. I got the kids out to the beach most days to give them some space. 3rd day it rained again! So we went for a scenic drive and the brought the kids to see Sherlock Holmes, bit of fun for them anyway. Yesterday DH took them for a wet swim and we had a cafe lunch with ourfriends as a way of thanking them. Great holiday.

Arthritis wise I'm not good, steroids have kicked in, I've gained so much weight but still my right leg hurts. Funny how the cortisone worked on my left knee and not my right? My feet are sore too but despite still being swollen my wrists are much better. Living on pain killers. Worried about the next infusion side effects. I'll have to try and contact my rheumy before the 25th Jan when I'm due for the next inflixamab.

So thats me, great to be home. Missed all you guys, best wishes to all, golitho

I can't go without saying 'Hi to you Golitho' and welcome back 

Your a brave woman that's all I'll say, although you sound like you've had lots of fun. Now please rest up and look after yourself as you sound in a bad way pain wise.

Infusion done, silly nurse hurt me by not putting the IV in my arm properly, several attempts until I told her to take it out please and put it where I asked in my favoured place.  She said it was strange that I had a favourite place and she wouldn't know where hers was!  I'm afraid I answered back 'well your lucky enough not to have infusions like us, but trust me we know our bodies inside and out'.  Silly woman.

Must go but will post soon to finish.

Jo, how are you? are you back to work yet?

Take care

Peggy

I'm not letting that nurse do it again, it's too stressful when she does and the infusion it's self is bad enough. How do you cope with the 4 hours in there? I usually read or chat if there are people that are friendly sitting in the room with me (4 chairs/machines to a room).

As for side effects, other than after the treatment I feel exhausted and sleep the two hours back home and go to bed early that day. I just feel out of it.  The other thing I noticed is that I cough a lot with a lose chest for about 24 hours after and hubby said that I do sound out of breath when I do things around the house, only I don't notice my breathing.  The hot flushes only started when I was taken off mxth!! I hate them, I went throught the 'change' 20 years ago so not happy that I'm having them again. It feels like someone has lit a fire inside me and they last for about 3 mins, with forehead sweats, not pleasant.  Your right Remicade works better with Mxth so as my rheumy my condition will get worse while I'm off it and remicade wont be so successful without it for a while, but he didn't want to stop it as it's great for my back problems, in fact it's wonderful for that area, just the feet that are screwed up.  Other than that no other side effects. What about you?

It is good your back we missed you for those few weeks. I'm feeling much better today, almost human!

Take care, keep resting and be good.

Jo, how's it going in your world?

Speak soon

Peggy

Hi Mags and Jacqui

Just quickly popping on before work, will try for more tonight.

I didnt realise I typed my name in at the end of my last post. I had just came on here after sending a few emails and I sign them off with Joanne, so thats probably why I did that

I always introduce myself as Joanne but everyone calls me Jo or as my younger work colleagues call me JoJo, so Jo is fine.

Well better be off. Hope everyone has a great day.

Jo

Jacqui - the way you descibed how you feel mentally is the way I feel everyday. I actually think 'go me' when I say something slightly intelligent

I haven't heard of that writer before, will have to look him up at the library, as Im an avid reader, when time permits  Im currently re-reading a book by Kathleen McGowan, as I couldn't get to the library this week. Might try to go to the markets this weekend, I love rummaging through the books there.

Did you get much more of your packing done? Glad you dont have far to move, that helps. It must be very exciting to be moving into something new, having grown up near there I understand 'old'. Our terrace house was made in the early 1800's and was actually used in the movie Pharlap - a brief walk by from one of the main actors - as his character actually lived in one of the terraces when training Pharlap. Anyway, Im waffling now

Mags - How's was your dinner?

Hope you both have a lovely weekend.

Jo

But in those social settings occassionally I do. I find if I drink mineral water or something I feel ok not drinking. Must be psychological.

Love the idea of a sports car, especially in this weather. Went to Balmoral Beach yesterday and it was jam packed!!! Kids like to jump off the wharf and I wanted those big Morton Bay figs to read my book under. It was too crowded really, like rush hour leaving at 6.30pm!

The Mosman Council brought in parking metres, $14 for 3 hours! A rip off isn't it?

Mags why are you replacing flooring if your house is only 4 years old?

Jo your house sounds beautiful. We would have loved to rennovate an old house but in this area those houses are premium prices. Anything with potential to rennovate seems to go for enormous sums. We took on this place because the house needed to be demolished and the land was generous for the inner city. Its meant we had to rebuild a workers cottage look a like but its a 4 bedroom house with 2 lounges. a study and my studio! The rooms aren't huge but having the space will be amazing. We've always lived in tiny terraces or equivalents. I really can't wait.

The pool is small but I can see its going to be fantastic, we got solarheating for it and so it stays at 28 degrees celsius and is lovely to slide into. Maybe one day we will afford to get the gas back up so we can swim through winter too but for now solar is enough.

Only took 5mg prednisone yesterday and I slept all night. I was feeling so shattered. My joints are of course sorer today but its a trade off isn't it? I'll try to get hold of my rheumy as well and ask about countering the side effects before my next infusion is due. Someone from chronic pain told me I can take something as well as the remicade to cut back the side effects. Worth an ask isn't it?

Talk to you later, survive this heat, are you still feeling good Jo?

Best wishes, Jacqui

Hi Mags and Jacqui,

Sorry to hear you are suffering too Mags This heat certainly does not help

Wow a wedding, how exciting for you (even though its been re-scheduled). I guess weddings are a few years off for me - gives me time to save

I have second thoughts on doing the beach walk now, as you two aren't the only ones who have warned me about the heat/lengthy walk. It must have been an able-bodied person who suggested this to me (cant remember where I got the idea from).

Have fun on Friday and I hope you catch your dinner

Jacqui - Have fun at the Gold Coast and good luck to your son with his dancing Hope your RA behaves for you while you are there

We are off to the 20/20 cricket game tomorrow night - never been to cricket before - should be fun

Take care to you both

Jo

Well I've made a big decision this week!!!  I've been in pain for 2 years straight, the back is better with remicade infusions (although not quite so much this time without Mxth) my foot is well and truly messed up so what have I to lose?  Nothing.......therefore this week I started swimming in the pool at our unit, this I'm going to do 3 days a week  AND wait for it I've decided to loss weight!!! and joined weight watchers.  I'm not saying it's all pain free, the foot hurts more and using the stick more, but what have I to lose, at least I'm getting some form of excersise. The weight coming off has got to be good as I've piled on so much in the last two years from doing nothing.  I used to run 4ks a day, golf, bushwalk and cycle 35ks a week before AS, so 2010 is the year to be positive and try anything.  That's the plan and I will try and stick to it, not saying I wont fail here and there but wont bet myself up if I do, just try again the next day.

I must say the excersise has made me feel better mentally and the food we're eating is really lovely and I'm having trouble getting through it all. One can but only try...

I will check with my rheumy about the swimming, but I'm sure that's o.k.  Oh and I've found out about Tai Chi for Arthritis......on the Arthritis site (as shown by the hospital) there is a link which gives you your local instructor in NSW.  I'm ringing next week to give it a go.   Have you heard of it or tried it??

I actually got some sleep last night in fact 10 hours!  The last 3 nights before I was up at 1am in pain, really bad hot flushes and feeling awful.  We came to our house last night and I was so exhausted went to bed at 8pm and slept until 7am, wait that's 11 hours. lol.  So cold here now and been raining non stop since yesterday at 4pm. Temps of only 17C during the day and last night down to 13C. It was lovely so comfortable to sleep....

Well just a quick one, so have great weekends and look forward to hearing your news on your return.

Stay save and well.

Peggy

You too kind, thank you for posting that on here, I'll give it a go at finding it and will let you know as and when if I've found it and it's been of any use.

It's so difficult as they say exercise helps the pain and keeps you more supple, but it's more painful when you do!  I think it's just finding that even balance.  I'm hopeful I will .  As I said I've got nothing to lose as it's painful either way, so I'll just try and push through it.

Many thanks

Peggy.

Is this like the moanin thread??? Golitho, I'm sorry to hear you are still having pain! I haven't been around much on the boards and need to read some of the postings to catch up.  I've been back and forth to the doctor trying to figure out why I'm in pain, although I think my doctor (my gp) thinks I'm a nutcase or worse yet a hypochondriac! Since a few days before Christmas, I've had the most horrid pain on the lower right side of my stomach and we thought it was the usual cyst, so had the u/s, nope just a small fibriod, and a couple of very small cysts on the left.  I even had a CT scan with contrast dye of all things, and nothing showed up.  I've managed to spend a ton of money on copays and no anwers to what seems to be my imaginary pain

Has anyone heard from Camama or Jody???? The board has been so quiet, I hope they are doing alright.