Moanalogue - February Edition

Well it happened again, wrote lots and lost it again.

Jax, I'm going to read up on that drug in case it's mentioned on Monday. I'm sure that medicare won't take too long, they don't usually? and the injection will help. I must say I admire you so much as you sound like your in a bad way at the moment and you've just gone back to work. I'm so sorry your having to deal with this, especially with the house near complete and that means you'll be busy with that as well. Mind you that is exciting for you.  We're near to saying 'yes' to all trade people and hope to start end of March, beginning of April.

We travel to Sydney to our business two days a week (semi-retired now) and stay in our unit there but with all the work being done I'll be living full time down south for quiet a few months to keep an eye on things.  Paul has made me 'project Manager' as I'm working from home and not the office anymore. Any tips???

Jo, I think a change is good for everyone and I hope you find the right position soon. The hospitality industry is very tough. Our son is a chef in a big restuarant in the city and works up to 80 hours a week and is always exhausted and frustrated with all the comings and goings that go on every day. The late nights being a killer, some nights he gets a couple of hours sleep only as he has to be back early in the morning having only finished at something like 3.30/4.00am!!! .

I like the sound of the book you read, I've finished my Patricia Cornwall one which was really good this time, more about them personally that the case and flash backs to other stores, I loved it and felt it was more like her early books.

Well I'm still swimming 3 times a week, still hurting but mentally feel much better doing it. I have butterflys thinking of the coming week ahead: My sister is going in for a proceedure Sunday to have injections in her spine for pain relief, all done in the theatre but she will be awake!!  Monday at 9 I have my appointment and then straight from that hospital to POW for my infusion, then Paul has his appt on Tuesday at 5.30pm (I'll be with him for that one).  Come Wednesday I'll need to have a drink I think, blow the liver...lol.

Well my fingers are hurting having written this twice, only first one much longer. Have a good weekend and hope the weather is kinder to you all than it is here with me.

Keep safe and well.

Peggy.

 

Hi Everyone,

Jax - I hope this is the med that puts you into a loooonnnnggg remission Deciding on and starting new meds is always scary and as much as I think everything I take is poison - where would I be without them ?

Good luck with all that packing and moving - you still do way too much

Mags - I hope your sister will find relief after her injections - sounds scary doesnt it - will be thinking of her.

Way to go with your swimming Mags  are you feeling better for doing this?

Was the Scarpetta book the 'Scarpetta Factor'? I bought this for my mother and am waiting for her to read it so I can

You have a busy week with all those results coming in - please keep us informed.

My breast is still the same and I try not to think about it, but it can be uncomfortable at times - thanks for asking

Better head off, take care all.

Jo

Poor Jo. It must be hard to ignore when it's so uncomfortable :-( *hug*

Good luck with the move, Jax. We'll miss you.

Mags, ask again about pain relief, I honestly feel so much better and even handled working again today, my feet are sore but manageable whereas before I couldn't put them down.

Which med will they add? My rheumy just rang and has changed her mind about mab thera now she wants me to try orencia? Have you heard of that one? Another infusion type. Now I have to research a new med. My feet are being done next Tuesday at RPA. I'll keep my fingers crossed for your hubby Mags. Jo, your appt s not till March is it? Thanks Ivy for missing me, I'm still here until the weekend, just busy.

On that note I will fly...Jax

Golitho, if you don't get any replies here on RA, you might like to pop over to the Crohn's and Ulcerative Colitis forums and ask the people there about Orencia. Orencia was recently trialled for IBD, so the gut crowd might be able to give you some first-hand stories, though obviously their perspective (and maybe their dose) will be slightly different because they're dealing with a different disease.

Ivy.

Losing posts is so annoying, its only happened a few times but always when I've spent ages replying to someone and then its just gone...

Thanks Ivy about the crohn's tip with orencia.

Started with a chest infection now, had to race off to get antibiotics yesterday so will lay low today and try and give them a chance to kick in. Asthma started too. Oh the joys of low immunity.

I'll be thinking of you Jo, next week. Hope all is ok Mags?

Best wishes, Jax

  GOOD NEWS AT LAST.....The results for hubby came back clear and o.k....he has two very large cists on his thyroid and will have to take meds for ever and a day, but that's o.k.  scans again in 6 months and if they have grown more than the 2cm they are now then surgery will be done to remove them. So pleased that's over for him and I. What a week?

Jax, I remembered the meds that my rheumy discussed putting me one along with mxth and remicade - Arava. looked it up and sounds just as nasty as the others. He feels (along with some others at the meeting) that by doubling the mxth and adding this just might get the foot under control and bearable. I'm willing to try anything quite frankly.  We will be talking pain management next time I think.  In the meantime I had my infusion on Monday straight after the specialist. Meet some lovely people again and was introduced to 'meditation' by one of them who lives near me. I'm going to give it a try as he said it's helped him with the pains he has in his brain, poor thing.  I tell you it's very sobering going to the POW clinic as there is always some one so much worst than you are there.  It was also so jolly that I didnt even read my magazine as we were talking the whole time. lol

I took the mxth straight after the infusion when I got home, boy this time it really knocked me for six with exhaustion . Only just starting to feel better today.  Oh by the way good luck for next Tuesday, it's a shame I will be in Perth as I don't live too far from RPA and we could have meet  up.  I haven't heard of the drug that's been suggested for you 'orencia'. Will look it up.

Jo, It wont be long before you have your appointment, has it settled down or is it just the same?  I'm counting down the days and it's not me going.  Don't you just hate the wait? I know just what that's like when you write so much and have so much to say and then lose it all, leaving you little time to do it again.

You sound very busy, how is everything else going?

Ivy, thanks for the info on the radio programme I'll try and give it a go if I have a spare moment.

Take care everyone and have a great weekend if I don't hear from you before then.

 

Mags - GREAT news about your husband - pass some of that 'good luck with results' my way

My breast is uncomfortable - I actually am hoping that the 4 kilo's I put on has all gone to that breast and thats my problem  Need to joke about it, as I cant always be thinking the worse

If you and Jax meet up Im coming too  I was born and bred in Camperdown  and worked at RPA so I will find you two  When do you leave for Perth?

Jax - Chest infection! You poor thing, I dont think you can catch a break lately  Good luck with your move on the weekend

Ivy - Thank you for your kindness - over the years you have supported me through a few health crises

Take care all.

Jo

Jo,

I'm in Perth next week so wouldn't be able to meet up with either of you.

Having said that it does sound like a good idea don't you think?  How wonderful to put a face to the names and catch up for a really good chat.  Of course I fully understand if either of you thought different and with Jax being so busy in the next week or so it wouldn't be for a while.

I'll leave it with you both.

Meantime, who could blame you for thinking the worst we all do in times like this, it's natural. However I'm thinking positive for you and keeping all fingers and toes crossed (where I can. lol).  Just think when you in there your not alone, we're sitting on your shoulders and support you all the way.

I'm still in Perth that day but will look on the posts to check how it went.

   

Jax safe and happy move.

Ivy thanks for the thoughts and comments, I'm on 20mg now and have blood tests in two weeks to check that my liver hasn't been affected yet again. fingers crossed. As for being a horrible drug, I'm not too bad other than the occassional morning pointing down the toilet. I feel exhausted all the time so don't know if it's one drug or the other or just the RA. Double the dose might be different, time will tell.

Take care all of you

Peggy

 

There is definately not enough hours in the day! Hi Libby, welcome to our moaning site and general rave column.

Mags, great news for your hubby, I'd love to catch up with all of you that can make it. After my move though, I don't work Wednesdays or Fridays if that helps anyone. When you're back from Perth aren't you off to Hamilton Island? Maybe after that? I've been on arava, it made me lose all my white blood cells! Went down to 8 I think but I felt good arthritis wise on it.

Jo I will definately have you foremost in my mind next week. I will be moving on the weekend so I won't post for a few days but I will be thinking of you all the same. I sincerely hope all is well with that breast. My breast tissue is dense and now I read in the Herald that they are linking dense breast tissue with breast cancer! Just my luck! I have to be screened each year anyway but another test to add to my growing list, as if we don't have enough things wrong with us!

Can't find much information out about orencia besides it affecting T cells and therefore immunity again. Plus you need to have failed the anti TNF's to be elligible. There are a few old posts about people starting it but not much else. Haven't had a response to my orencia post either...

Ivy, I'm at dance classes unfortunately, I love listening to radio national, maybe I'll try and listen in the car if I can get a signal in the car parking building. Sometimes am is hard to receive in the carpark.

Better go, more boxes to pack....Jax

I saw on Oprah (I know, not always the most reliable source) that it's best to get an ultrasound if you have dense breast tissue, as x-rays can miss things because of the denseness.

Thought you might like to know, - Ivy.

Hi we moved and I survived, JUST!!! Had a really bad pain night Saturday night had to get up twice and take some BT meds to keep me going.

Tomorrow is the BIG day for getting my feet injected under X ray. I really hope it helps, I know its going to hurt but you can put up with pain if it helps at the end of it.

I'd love to meet up 10th March, is that possible for you Jo too? We could meet up in one of the cafes around RPA? I'll reconnoitre a few names when I'm up there next or has someone a better suggestion? 11.30am is fine with me.

It would be so good to meet you face to face, I'd love it.

I am so happy to be in my new house the space is amazing. My friends were laughing because my dining table looks tiny in the space. I am going to get a new one eventually that will seat 10 people hopefully and then we can have big dinner parties again.

The pool of course is in constant use!!! So hot isn't it?

Love to you all, Jax

Hey Everyone

Jax - glad your move went well  Hope you are even more settled in today.

I had my mammogram and ultrasound done but as it was late I have to wait for the results in the morning

Will let you all know once I get them and see GP.

Im running late with everything today - must rush off.

Hope all is well in Perth Mags

Jo