Joined
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17 Posts
Hi ya everyone
I hope that you are feeling not to bad today.
I went to the hospital on Tuesday to see the consultant for the first time since I got my dx. Of course I had lots of questions about the medications I was on and other things. My doc since I started going in my opinion is not the best on the information giving side and in the past has down right confused me giving not enough information one time and far too much on others.
I asked about the future and what can happen, not will happen but can happen. I am having terrible joint pain, suffering from never ending tiredness and skin problems. She said about internal organ damamge but said that there is no evidance of that which is wonderful news but she does want me to have an ecg as when I have a bad flare I get this terrible pain in my chest. So the next time I get the pain I need to ring to arrange that.
I asked about if in time I could be treated my GP and she said some of them won't prescribe the immune suppresants . Now I know that ours will prescribe Methotraxte because when immune suppresants were suggested to me before the dx I went and saw my Gp and they do have patients within our surgery on them. I am on Cellcept at the moment and have just increased my dose to 1000mg a day and thankfully with no problems at all. I would feel much happier in the care of my GP to be honest and if all the consultnat is doing is seeing me monthly and looking at blood results I cannot see that I would be any worse off if fact I would be much better off from a mentally coping with this point of view. I see dermatology only at the hospital and I will tell you how good the doc is she asked me what I was taking tablet wise...........well hello you have the notes!!!! It wasn't a case of what are taking out of what I have prescribed it was I haven't got a clue what I have said to take with what.
My weight is increasing because of the steroids but his has been going on for ages and I must say that it is a huge issue for me. I try to make light of it in front of others by making a joke of it but deep down inside I am crying my eyes out because I hate it. I am reducing my steroid intake now that I am on the Cellcept but it doesn't help how I am feeling. My GP knows I have problems with my weight gain and is very supportive.
My hubby is, well useless basically and I have been surprised by his attitude to be honest. Before we got the dx he was all right I have had enough of this and we will get a second opinion and we will fight to find out what is wrong. Now we do have the dx he totally ignores it, well he did say a couple of weeks ago we will ask what we can do to get rid of this and when I said you can't it is here for ever he has treated me like I have broken a finger nail. In fact on the way home from the hospital I said to him shall we talk about what has been said, I always take him in with me and he just no I have heard all I want to hear so I haven't mentioned it since.
He annoys me so much because I don't want hearts and flowers and to be wrapped up in cotton wool all I want is a bit of help with the house work, the running of the house and for him just one in a while cook tea. He has realise that sometimes now I cannot do six things at once and look after the girls and make sure that all he wants doing in done. Don't get me wrong nothing would make me happier to do that again on a daily basis like I used to do.
I have known my GP now for over fifteen years and he knows me well, not that I go that often but I feel comfortable with him. I like his attitude because he is understanding and cares. So now that I seemed to have moaned through this thread the main question is would my GP be able to treat me instead of the hospital? Could the GP read from the blood tests what the dermatologist is reading? I am sure he could get through to hubby as well that I need some help and support when I feeling not well.
I am sorry for moaning so much this morning but I just feel really on my own with this at home right now. I try hard not to let others see some days how I am feeling because I feel that they just don't care and what difference will it make anyway.
I hope that you all have a brilliant weekend and thank you so much for listening.
Hugs
Jules
XXX
I hope that you are feeling not to bad today.
I went to the hospital on Tuesday to see the consultant for the first time since I got my dx. Of course I had lots of questions about the medications I was on and other things. My doc since I started going in my opinion is not the best on the information giving side and in the past has down right confused me giving not enough information one time and far too much on others.
I asked about the future and what can happen, not will happen but can happen. I am having terrible joint pain, suffering from never ending tiredness and skin problems. She said about internal organ damamge but said that there is no evidance of that which is wonderful news but she does want me to have an ecg as when I have a bad flare I get this terrible pain in my chest. So the next time I get the pain I need to ring to arrange that.
I asked about if in time I could be treated my GP and she said some of them won't prescribe the immune suppresants . Now I know that ours will prescribe Methotraxte because when immune suppresants were suggested to me before the dx I went and saw my Gp and they do have patients within our surgery on them. I am on Cellcept at the moment and have just increased my dose to 1000mg a day and thankfully with no problems at all. I would feel much happier in the care of my GP to be honest and if all the consultnat is doing is seeing me monthly and looking at blood results I cannot see that I would be any worse off if fact I would be much better off from a mentally coping with this point of view. I see dermatology only at the hospital and I will tell you how good the doc is she asked me what I was taking tablet wise...........well hello you have the notes!!!! It wasn't a case of what are taking out of what I have prescribed it was I haven't got a clue what I have said to take with what.
My weight is increasing because of the steroids but his has been going on for ages and I must say that it is a huge issue for me. I try to make light of it in front of others by making a joke of it but deep down inside I am crying my eyes out because I hate it. I am reducing my steroid intake now that I am on the Cellcept but it doesn't help how I am feeling. My GP knows I have problems with my weight gain and is very supportive.
My hubby is, well useless basically and I have been surprised by his attitude to be honest. Before we got the dx he was all right I have had enough of this and we will get a second opinion and we will fight to find out what is wrong. Now we do have the dx he totally ignores it, well he did say a couple of weeks ago we will ask what we can do to get rid of this and when I said you can't it is here for ever he has treated me like I have broken a finger nail. In fact on the way home from the hospital I said to him shall we talk about what has been said, I always take him in with me and he just no I have heard all I want to hear so I haven't mentioned it since.
He annoys me so much because I don't want hearts and flowers and to be wrapped up in cotton wool all I want is a bit of help with the house work, the running of the house and for him just one in a while cook tea. He has realise that sometimes now I cannot do six things at once and look after the girls and make sure that all he wants doing in done. Don't get me wrong nothing would make me happier to do that again on a daily basis like I used to do.
I have known my GP now for over fifteen years and he knows me well, not that I go that often but I feel comfortable with him. I like his attitude because he is understanding and cares. So now that I seemed to have moaned through this thread the main question is would my GP be able to treat me instead of the hospital? Could the GP read from the blood tests what the dermatologist is reading? I am sure he could get through to hubby as well that I need some help and support when I feeling not well.
I am sorry for moaning so much this morning but I just feel really on my own with this at home right now. I try hard not to let others see some days how I am feeling because I feel that they just don't care and what difference will it make anyway.
I hope that you all have a brilliant weekend and thank you so much for listening.
Hugs
Jules
XXX