RA

Hi, I'm a newby and am also in the chronic pain forum where you may find a list of my delightful complaints - variety is the spice of life! RA, however, has been the main underlying condition and most other complaints sprang from that. i am mobile in the house but generally wheelchairbound when I go out. I am on Ibuprofen, prednisalone, Enbrel - wonderful injection! and then all the other medication which I take because of the side effects of the RA all of which give me other side effects for which i am on medication all of which ooops!!!! It's like being in a time loop, isn't it. I've had active RA for fifteen years but probably also had childhood arthritis but it was not diagnosed. I only joined yesterday and have had lots of replies so i thought I would try here as well.
Love and hugs to all fellow loopers

arthur Itis

Hi there, golitho

If somebody had told me twenty years ago that I would find myself coping with this mess I would have laughed at them, but the strange thing is that you do cope. The down side for me is that on good days I get fooled into thinking it's gone forever: 'Oh, great! it's gone! I can get on with my life now, so. . . tomorrow I will do this, that and the other.' Then tomorrow comes and the RA and all its club members: osteo, sjogrens, AS, degenerated discs, osteoporosis, occipital neuralgia  return with a vengeance, yelling at the top of their voices, 'Yah! We fooled you! Here we go again!' 

Like everybody else I know on the good days I do too much and even though I know I am doing too much I still go on doing it! Stupid or what?

I'm a borderline wheelchair user, by the way, I am on my feet in the house and for short distances outside but generally outside I'm in my wheely-bin, just like the other rubbish.

Most of the time I try to ignore my health problems and it is only when I write out a list, as on here, that I become aware of just how bad it is - then i nk about little kiddies with it and people with far worse complaints and I put it to the back of mind and try to get on again.

Ah well - c'est la vie!

art6hur Itis

Hi there golitho

Fancy that then!" I was a teacher too until my eyes deteriorated. I retired about twenty years ago but still miss the kids, I really love teaching teenagers, particularly the ones with a wicked sense of humour. Now my grandchildren are teenagers - well in their twenties really and we have laods of laughs together. I don'y know about you but i love laughing and it's such a fantastic therapy. You are into art, are you? I trained in art but never taught it. It's strange I used to enjoy doing it but not teaching it, my subject was and is literature - give me a book and I immediately become unconscious, or so my hubby says.

Write soon,

arthur

Hi,
I'm fairly new to these forums but getting so much out of them. Having just read all your posts has lifted my spirits again today just when I needed them. I really felt alone until I started reading everyone else's problems, and your so right you think your going through a bad time or day and then you read that someone else is suffering so much more than you are and that makes you look at your condition in a different light.

I've only been diagnosed with AS since November last year, but it turns out that my condition is 7 years down the track...go figure! I put all aches and pains in my lower back, swollen fingers etc down to just over doing it and old age (I'm 53 so that's not that old is it?). My specialist has been trying to figure out a way of getting me to a more comfortable condition as Humira and Methotrexate together is helping with the lower back but not the huge amount of pain I have in my right foot.. Haven't worn an enclosed shoe for 15 months. I start on Remicade in September when I return from a trip overseas (that will be interesting on a plane for 24 hours) plus no family members know about my condition or that I walk with a limp and have a disabled sticker... May be time to come clean?
This week I feel totally out of control what with pain and news I will be going on Remicade, death of several family members and pressures at work (which I do at home as own business). My doctor tells me to take hour by hour, day by day and I'm learning to just control the things I can and to let go of the things I can't. Sorry sound really down don't I, must stop that. As I said reading your posts makes me appreciate that things for me aren't really that bad. I thought about meditation to try and zone out and focus on the good things, does anyone out there use any forms of alternative's to help them?

I hope you all have a better day today and the sunshines on you. Take care and be happy, here's to a good day tomorrow for all.
Peggy Baggins

Hi golitho again.

Yes i do manage to read but it's becoming increasingly difficult. I have no useful vision in one eye but have some in the other so with good lighting and a wide computer screen and BIG fonts i manage. I believe the good eye is, however deteriorating and i am really nanxious trhat i retain enough useful vision to complete my PhD by next June/July. it's typical isn't it? You choose a subject for advanced study 'Thomas Hardy and the Carnivalesque' which requiores a fantastic amount of reading when you know you can hardly see anyway! Glutto for punishment that's me -  never min d, I love it so that's all that matters.

Your work sounds fascinating and I'd love to see some of it.

Ooops must go - very friendly, helpful next door neighbour has just arrived for a cuppa and a chat - catch you later

besties

arthur

Ladywriter,

I find my faith such a help, even though I am merely a 'practising' Christian - I believe if I keep practising maybe one day I'll get the hang of it!! Heeheehee. Seriously though, my faith is certainly a help, particularly in those dark lonely hours between two and four when sleep just won't come.

Hope your return to mthtrxte is good it was good for me for about four years and then i had to come off it - now I'm on Enbrel the wonder horse! Life was a ***** without it but it such a help now.

Hope you enjoy your family linch

all the best

arthur

Thanks, Arthur. I try to spend as much time with my folks as possible, since their health has been rapidly declining for the last year or so. They're learning to accept my illness, and understand that I have good days and ***** days, and so am unavailable at certain times.

They, especially my Mother, are a major part of my support system-people I talk to about my disease, but I have to branch out more because they won't be around forever. I can tell my Mother everything, although sometimes I don't. When I have to talk about what's going on with me, healthwise, I try to dole out bits and pieces to my friends so as not to overwhelm anyone, because it sometimes overwhelms me, and I don't want to do that to my friends. I have a therapist and a psychiatrist who talks and listens and doesn't just dispense meds, so they're important in my support system.

This website is really a blessing, because I feel I can talk about anything here, and so many people have already been through what I'm going through with the RA and similar illnesses and can offer advice and/or condolences, whatever the case may be : ) But when it comes right down to it, my Faith sustains me immensely. Glad it works for you too.

Dear Ladywriter and golitho

Yes, that's what I do, dole out bits and pieces but mainly because I think people just wouldn't believe the whole amount - I mean apart from in here, who would?

And, golitho, that's exactly it - I don't want to be defined by my illnesses, my response is generally the brain works but the body doesn't, and this is precisely what studying permits me to do. Up at uni I fell like a 26 year old with a few visual probs and a mobility issue, whereas with people of my own chronological age i feel like a wasted heap of rubbish. I hate it when conversations turn into competitions about illnesses and fell like asking 'Do you want to phone a frined or will you take 50/50? It's no use asking the audience because they would all give negative answers too.

 No, I'm a student, not a pensioner! Maybe I'm just in denial!

I so admire you, ladywriter, a recovered alcoholic for so long, that's quite a feat, you must feel so proud.

You know I've only been in here (sounds like a Jack Nicholson ward!) for less than a week but I'm finding it really helpful in that it helps me to let go and to listen to other people's probs and admire how they deal with them. I suppose we are all trying to fly either over the rainbow or over the cuckoo's nest

arthur

Dear Ladywriter,

I myself am only just coming out the other side of this fog after nearly a year of being told I have AS. Your going through the normal procedure I believe.  Having sites like this has helped me so much as I don't feel alone anymore and I can talk with people who truly understand what your going through.  I know we have great families and they're so understanding but at times I don't think they fully understand how frustrating it is not to be able to do the things you used to... I myself used to cycle 35K's a weekend, play golf, bushwalk, swim etc with my husband, and lead a very active life.  For the last 15 months I've not been able to do any of these things as I'm completely buggered for days on end after and in great pain during and after.  One thing that has helped me is know to control the things you can and let those things you can't go!

This weekend I put on a pair of my wellies and went to a goat show with my husband, I limped, I was in pain but pushed through it. Yes todays now a 'not so good one' pain wise, but boy do I feel good having got out there and given it a go. It was worth it.  I'm not saying I can do this all the time, but when I feel I can I'll try.

Don't be hard on yourself    try to look at the funny side of life.    I used to be embarassed about the 'disabled sticker' for my car as I drive an MX5, but as I say (and a friend has suggested a bumper sticker) I may be a bit disabled but my brain isn't and I still have taste!!!  I don't drive it often, only when dry outside that way I can have the roof down and easier to get into.

Take care, keep talking it helps.

God bless and I hope everyone on this forum has a better day tomorrow.