Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Thanks Kathy, you've just explained a lot of the questions she was asking me, obviously they were to do with the MTX and my reactions. I didn't realise it at the time. I think she is going to be a good understanding Rhumy and knows about PA, I was very impressed. She suspects that is actually what my sister has too, but it doesn't really matter either way, I know you show for both too. My sis is already a client of the pain clinic here. She doesn't get on too good there though I don't think, as she will not do any of the therapys or anything to help herself, just wants the meds. They get a bit frustrated with her I think. She won't talk to me about it much. The pain clinic referred her to the Rhumy and they or her pcp won't increase her dose of mscontin without the Rhumy telling them how much pain she was in?? How is someone supposed to be able to tell this?? Maybe they have invented a pain-o-meter. lol. Anyway, I can just keep being there for her and listening. She has very recently had a couple of cortisone injections and prednisone, so hopefully some relief is coming her way soon. Thanks again for your good wishes and it is wonderful!lol. Janice. [Editor's Note: Janice, I did magnificently on MTX in the beginning. It was only over time (and after my dosage was increased to 25mg) that my liver panels rose. Fortunately, routine blood tests catch this sort of thing very early and no permanent damage ensued. A good rheumy is one who is both prepared to be very aggressive to help stem the progression of the disease, but who at the same time is prudent in her dosing approach as the first requirement of a doctor is that they do no harm. It seems as if the pain clinic AND the rheumy are also taking that approach with your sister. Given her unwillingness to do anything else they ask of her to help herself, they are 100% right to refuse to hand her more drugs. The drugs will be increased if, and only if, she has not been able to feel better doing the other things they've asked her to do. In the end, you also need to remember that you have to make yourself number 1 and if your sister won't do things to help herself, you can't do them for her. Good luck to both of you and best wishes of the season. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 That is wonderful, Janice! You're right that this is half the battle. Another quarter of the battle is seeing that there is hope - that you won't hurt so badly forever. The bit of improvement with the MTX is giving you that hope as well. Just knowing that there are meds to help me, and that there are other meds to try if this one stops working for me has helped me deal with the remaining pain and minor flares even better. I truly think my pain tolerance is improved just from knowing this - it eliminates the panic factor, which was just feeding my suffering even more at first. Here's to freedom from despair! sherry z > > Hi Everyone, I am so happy at the moment and just had to share with > you all my good news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2006 Report Share Posted December 23, 2006 Thanks Sherry Z, Hear hear! I agree with you totally. I also feel my pain tolerance improved from when i first started believing I had this disease and gaining some knowledge. Just knowing that there is light at the end of the tunnel is huge. I think finding this group has been absolutely wonderful in giving me that insight and stopped my panic. I have gained so much knowledge from you guys that I can deal so much better with everything, not just the pain, but my emotions as well. It is Christmas Eve morning in Oz and the excitment is building already. Merry Christmas to you and all. Love Janice XXOO > > That is wonderful, Janice! You're right that this is half the battle. > Another quarter of the battle is seeing that there is hope - that you > won't hurt so badly forever. The bit of improvement with the MTX is > giving you that hope as well. Just knowing that there are meds to help > me, and that there are other meds to try if this one stops working for > me has helped me deal with the remaining pain and minor flares even > better. I truly think my pain tolerance is improved just from knowing > this - it eliminates the panic factor, which was just feeding my > suffering even more at first. > > Here's to freedom from despair! > sherry z > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 In a message dated 20/12/2006 16:35:53 GMT Standard Time, itchy_itch69@... writes: Hi Everyone, I am so happy at the moment and just had to share with you all my good news. I don't know what I have done to be so lucky lately, but my guardian angel created a miracle. Hi Janice, That's great that you managed to get a diagnosis and can now see in what direction to go. I hope things improve for your sister in time. Hopefully she will eventually be able to accept her condition...............but not accept it so much that it takes over. Just reading on through your subsequent posts. (I'm still way behind! lol) Don't ever think that it is a problem for you.......................or anyone else..........................Are you all listening?......................Especially you newbies. lol........... to come on and vent when you need to. I feel that a major function of this group is to make sure anyone just joining gets to vent as much and as long as they want. Watch how often someone sends out their intro post and they sound like they are in utter despair but just joining and being in touch with others who can identify with what they are going through pulls them up out of it. Weeks later they can sound positively chirpy! lol That is why I try to answer any intro posts just to make sure they know that someone is acknowledging them. Trouble is I am usually so far behind nowadays that by the time I answer they probably think I' M new! lol So, I hope if someone wants to contact us to tell us how good or bad they are feeling at any particular time, they don't hesitate to do so. Reading on, You said: I am glad that it showed the inflammation absolutely everywhere in black & white though, so I know it is not in my head and have some proof to show if i ever need it. Well, I'm glad that you don't have inflammation in your head. Then we would have had to call you 'Big Head' lol Just read about you having to stop the MTX. I'm sorry about that. I hope the Sulph works well for you. Best of luck to both you and your sister. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 You just crack me up . Thanks for a great laugh. It is in my head though - in my jaw!! So you will just have to call me Big Head after all. LOL. Unfortunately my sister has let the disease consume her totally and now she has an excuse to do absolutely nothing. She still won't learn anything about it and reckons her life is over. I wish she would join a group like this, but there is nothing more i can do for her anymore. She doesn't even really want my support and would rather wallow. Can you believe she was even a bit miffed that I had just as much damage as her (even a tad more), but am still living life, working and looking after my kids. I don't know whether she is jealous or what, but she isn't really talking to me at the moment and just gets frustrated with me, so I will keep away for a while and maybe she will come round eventually. I have learnt so much from this group and she hates how I can sound like a Dr. I need to concentrate on me at the moment and she has worn me out. My time to be selfish. She still doesn't have her son home. He is only 10 and has been living with another family since September/October. I am trying to concentrate on her getting him back home where he belongs at the moment. But she is telling him it is up to him and he can only come home if he behaves properly! Give me strength. Boys are boys, but she wants a little porcelin doll that just sits there. Maybe he is better off where he is. (there goes that venting) Glad to see you back posting & thanks for letting everyone know its ok to vent. Take Care Janice > Don't ever think that it is a problem for you.......................or anyone > else..........................Are you all > listening?......................Especially you newbies. lol........... to come on and vent when you need to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Hi Janice, Seems like your sister is in need of the old white rose treatment. Buy her a single white synthetic rose and put it in a glass vase, then put it somewhere prominent so she can see it. Tell her that every time she looks at it, it is a group hug from you, her son and all the group. Hopefully she will realise that she is not alone and you will still be thinking of her even when you need time for yourself, as we all do of course. My white rose bush still has some blooms on it even though it's the middle of winter here. Now some cynics would say that is global warming, and I say yes but not the type that you think it is. It is the collective love and power that this group has to offer. Keep the light shining, Ian. > > > Don't ever think that it is a problem for > you.......................or anyone > > else..........................Are you all > > listening?......................Especially you newbies. > lol........... to come on and vent when you need to. > Quote Link to comment Share on other sites More sharing options...
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