Date: 25.03.2010
From: jill
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Subject: Re: Im 23 newly diagnosed with RA. Advice needed
Hi Kristine, that is diabolical!!the fact your rhummy suggested that the rhummy nurse will support u etc and she hasnt is terribe, I know that most of us , if not all, will tell u that the nurses nurse are wrong....u said in your post when u rang the Nurses, did u ask for the Rhumatologist Nurse, the rhummys specialist Nurse? if yes, then what U need to do, just a suggestion, is to ring the rhummys secretary and explain what he told u, and what was told to u, asssuming itwas the correct Nurse.....other general nurses would probably say what they said, \i do have to sday tho, My Nurse is amazing, im on MTX and Bio meds , Enbrel, I c her every 3 months, go thru m y drug chart, asdk how I am coping, and ask how I feel about the Bio meds and MTX etc, but there never is enouigh time to discuss lifestyle, but over a period of time, they get to know u well, becos of the regular contact, I doubt very much u will see her monthly, we do have Monthly blood tests done, via GP or at the hosp, but that is about it, they do give out sympathy etc, but really they r only there to check u over, if ya well on the meds etc, or not, or if u want to change(im talking about the bio meds), I barely saw her wehn on just MTX, if i was unwell back then wehn just on MTX id go see my GP or ring her up and say I need a steroid jab etc, and she wld fit me in asap, or my gr8 GP does it.... your rhummy was correct to a certain extent, but dont think u see the nurse monthly, unless u r unwell due to the MTX, and when u have the 3 monthly appts, they ask about your joints etc, and if there is no progress with the MTX they will mb suggest going on the Anti Tnf meds like Enbrel, but u have to fit a strict criteria etc to get those meds, has to be approved etc......when u r on the Bio meds, the specialist rhummy nurses, then take extra care with us that r on it, but they arnt really there to talk about diet and what happens in ourlives with our families etc, they dont have the time, they wld tho reccommend u see a Nutrionist for expert stuff like best foods to eat...but at the end of the day, they do expect us to Manage our meds, and go by how we r feeling and if there is any progress on the MTX, But this forum is brill becos we support one another, and its in here that we learn a lot, tips etc, support when we r low, best ways to get DLA benefit(hope u r claiming), if not, U r entitled to it. nearly all of us cant cope most days, and we feel isolated, that is y this forum is great, U will get to know us if u pop in regular, we find bonds with the peeps that reply to us, been in here year and half now, love it, vvery supportive and even have fun on here...lots of fun characters that lift out rotten days..... The fact U have just found out, u will be in shock, Overwhelemd, and most of us wld suggest that U read up about R.A. but always remember, we r all different , and some of us will have it worse than others, ALWAYS think positive, as stress will make u feel fatigued, and poss cause a flare up....... and also any posts u read, does Not mean that it will happen to u becos u have the same disease..... I think the fact U have just been told, will be horrific news for u, but on the other side of the coin and its a positive one is this, that they have got U started on MTX, that is the great part, becos some ppl dont get it for ages, I didnt and in the meantime, (years)lots things began to damage my joints becos they Misdiagnosed me........Hope I havnt upset U about the rhummy nurse etc, but I know from personal experience that they do give U the time that U deserve medically, but they cant go into for example 'how u deal with your children, how u make your friends and family understand, So im not very sure what the rhummy meant about lifestyle.......think he probably meant that if u do exercise and mention it to the nurse, she may tell u tht its either good, or not mb the best for your joints, and suggest something else.......but at the end of the day, we r on our won to deal with it, that is y it is sooooooo importnat to have an understanding hubby, partner, m8s etc, and most of all Our fab Forum.... Other members, please tell me if im wrong, ive been seeing my nurse who is incredible for near on two years every few months, I ring her if there is a prob, or she rings me, but as I said above, she supports me with my meds, or will refer me for physio, or another surgeon, but other than that, we have to deal with our health issues, unless there is a prob with the bloods etc, or joints, at the end of the day, we have to learn about our condtions.....thats my experience anyway......Kritstine, Not trying to make u feel worse than U do, but I believe in Honesty, and go by what otherts have experienced in here and also draw from my own personal experience from my fab bio Nurse, I know ive mentioned shes fab, but she truly is, But she doenst have the time to go into massive detail about what we eat, how we exercise, how we cope with family issues and the like....... however, there is a pain clinic that they can refer u too, and she shld suggest it to u, and there is help available taht way, by way of talking to a Cognitive therapist, who can help U learn to readjust to this 'new way of life for u, and family'.......other than that, we jjust so our best, and that is Y this Forum was made, so that we can help one another. Take care Kristine, U do have a lot on your hands becos of the young family u have, Im a mum of 5, and its tough at times, but there will be so many people to ansa any questions u have, and we dont mind at all, how many times u need to ask something, there r a lot of good post from the past that may help u, so that is worth looking back into previous posts too.... please keep your chin up, WE R ALL HERE FOR YOU Jill xx ps sorry 4 rambling on and any spelling mistakes
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