First visit to site - hello

dreamdaisy

Ooooh tilly, you tech-head! I'm dead impressed and rather envious.

Hello Janet, I hope you are as OK as you can be. I have been thinking of you today and I hope you are feeling a little more 'settled' since you found here. DD

dorcas

Hello Janet and welcome from me too.

You've had a lot of great advice on here already and you'll know now that you are not alone with this condition.

I have PA too... and one of the things I found helpful was to read about the condition ...but only from reputable sources! I've posted you a link to the Psoriasis and Psoriatic Arthritis Alliance... their website is really good and easy to navigate too.
http://papaa.org/tiki-read_article.php?articleId=26

It must be very difficult to know what's best to do with regard to the low blood count and the nurse's advice to consider stopping the Mtx... but it does seem you've reached a good compromise.
as others have said many of the meds we take can cause constipation...Personally, I think that prevention is better than cure! so I have a high fibre breakfast and eat a lot of fruit and veg which does help..... at times though the docs have also prescribed Isogel or Lactulose which aren't laxative but provide bulk similar to fibre in the diet, so are a more 'natural' solution.

hope to see you posting around the forum....

Iris xx

janetA

Thank you every body. Been to the doctors this morning re the low iron levels. He looked at the blood results and said that the bleed must have been significant for the count to drop so low. He's not convinced that there isn't still 'something' else going on down below and maybe that I am bleeding internally - lovely!!! Off to see the 'bottom' specialist next Friday for him to investigate. They think once they get that sorted I will feel a lot better and the way I am feeling right now and particularly over last weekend isn't just down to the mothotrixate but the low iron level. The specialist nurse has increased my folic acid to 6 times a week so lets see how that goes.
Feel very tearful at the moment and am fed up of being poked and proddled, actually shouted at my husband to bloody well leave me alone this morning and then locked myself in the bathroom - how very mature!!!
Thanks again for your good wishes.

Janet xxxxx

dreamdaisy

The never-ending round of appointments, pills, Xrays, more doctors, scans, repeat prescriptions etc does tend to bring out the inner five year old in us all from time to time, there's no doubt about that. Shouting at those whose fault it isn't is an 'occupational' hazard with arthritis and I am sure he will forgive you. This is a testing and trying time for you both, he is probably as lost and bewildered as you, and as upset. I warn Mr DD in a polite but straightforward manner when things are fraught mood-wise, that way he knows not to push anything too far! You will find your own strategies over time for communication etc. Men and women speak, think and cope in very different ways, which often doesn't help. DD

janetA

Thank you DD. I sometimes think he just doesn't get it!!!! But, as you say it's affecting him as well. He has seen me change in a matter of weeks from a bright, bubbly vibrant person who loves having a laugh to me living in my dressing gown and fluffy socks!!! xx

dreamdaisy

I stoutly maintain that nobody 'gets it' until they've 'got it' themselves. People think 'Oh, arthritis, my gran had that and she used a stick.' and that's about all they know about it. It takes a while for those close to you to get to grips with the variability of the condition, the effects it has on you, them and life generally. I knew arthritis was painful but I did not know how tired it can make one feel, how grotty and ill, how demoralising and distressing it is (ooops, that's negative and I apologise but I am fifiteen years in with this business and it does have those effects).

I didn't know what was wrong with me way back when it all began and with hindsight I should have chased things much harder than I did. Whether that would have changed my current situation I have no idea but I like to think it might. Anyhoo the whole 'arthritis thing' crept up on me, bit by bit, and by the time I was accurately diagnosed I didn't care. Life had changed and would not be the same again. We are all different in how we are affected, how we cope with the pain and the down days, the demands we make on ourselves and others, but from day one I realised that this was not my husband's fault (I know it isn't mine either but I still apologise to him for being a drag and a drain).

You are in the very early days of this and both of you are on a huge learning curve which will vary from steep to nigh-on-bloody-impossible but as long as you keep talking to (not at) each other, as long as you can voice your fears and worries to him and he can do likewise then all should be well. It's when you don't talk (or only shout) that things can worsen. DD

frogmorton

Oh poor you Janet, but better safe than sorry re the blood thingy.

We have a thing on here called pocket duties where we (virtually) nip into each other's pockets to support one another if we have an appointment we are dreading.

So l will be in your pocket tomorrow (head end of course) and all will be well.

Love

Toni xx

Ps sorry about the husband isssue...it happens both of you will be upset about it :sad: ((()))

stickywicket

You're bound to feel very tearful. You have so much physical stuff going on that your mind & emotions are having to run to keep up. It's hard. I hope all goes well with 'the bottom specialist' (Great name!) Try to keep your other half on board. he's got a lot to get used to too. When you feel like crying, shouting or locking yourself in the loo come here. We do understand - and some of us, despite our chronological ages, aren't all that mentally mature anyway so we'll be on your wavelength.

lalla

Hi Jenny , you have been through the wars, but hopefully now you have a diagnosis, treatment , and a whole bunch of people who know how you feel, you will feel more positive and not as frightened. MXT and PA can make you feel exhausted, and it can take a good few weeks to buid up and you start to feel the benefits. Tears are a good release, also to talk things through , some hospitals run patient education programmes which I found very good, especially when the husbands/famillies came and were able to voice their concerns and in some cases-role changes and all the support that is availableLove and Hugs(((((((jenny)))))))Take care Linda

lalla

Sorry Janet got your name mixed up, still Jenny starts with J ,thats not bad as the old brain cells get out of sinc, that or the pain killers muddling things. Anyway hope you (Janet) are feeling reasonable today, in the early days I kept a diary to record activity and pain and mood levels, good to look back on when you have been on treatments for a while and you are improving, cos when you are in the midst of it , its hard to see progress (((((janet)))))) Linda

skezier

Hi Janet

Sorry I am late seeing this :oops: but a belated welcome from me as well.

I also have pa and am anemic.... going back for another test to see if its dropped lower and then they will decide what they might do about it.

I promise you this much it does get easier...it really does but initially its a shock and you feel a sense of grief as ell as see the most hideous things happening in the future. A friend of mine told me back along one day at a time and Janet thats as far as I look now on the health issues front.

Had the tubes both ways and the bottom end... its a bit uncomfortable cus they ill you up with air but its not too bad.

Are you going for the thing thats starts with a s or for the full coloniopsisy? If its the latter they will sedate you so with luck you make not know its going on.

The tiredness is part of the pa for sure.... its horrible but its not permanent it comes and goes and flower I promise you it does get easier. hang in there and nice to meet you. Cris x

janetA

Hello every one.

Well, had a bad night Wednesday as I started to bleed again at 11.30pm. Rang A & E and the doc said are you dizzy, feeling sick or have you passed out? Whe I said no he told me not to bother going in. It's 5 weeks since the first significant bleed that caused the anemia and things really seemed to have settled down so I was a bit gutted to say the least.Didn' manage to get in to work at all yesterday.

Spoke to my specialist nusrse who should have wings, she is an angel. Have had some emergency blood tests this morning to make sure the iron level hasn't dropped any further, she will ring me this afternoon with the results.

BUT - on a massive positive, took my third week of Methotrexate yesterday and feel fine today, well enugh to com einto work even after the events of Wednesday night!!!

Please forgive me I cant rmemeber whichone of you suggested a diary but I thought about that last night Because do you know what, when I really think back to about 6 weeks ago I can see some improvement I really can.

Talk Later - thanks again - Janet xxx