[Jules123456]

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

 

[Katharine]

Hello Jules

I can't really answer you on that question as I live in Belgium and the system is totally different here. GP's here do whatever they want...

Personally, I have a GP who, as you say, "has known me for years", and I feel very comfortable with. However I also go and see my rheumatologist and neuro roughly every 3 months. Although my GP is wonderful he is simply not specialised enough. For example, he won't ask for the same blood tests to be done (and blood tests are very important when on immunosuppressants) as they are very specialised and even he admits they're "above his head".

My rheumatologist is OK but is more distant and I tend to work with my docs differently. I go to my GP in between visits and even for more "minor" problems and if my GP thinks the problem is more complex, he puts in a call to my rheumy or neuro to be sure.

Is there a reason why you only see a dermatologist and not a rheumy? If you are on cellcept I presume you have more systemic involvement?

As for hubby, well... men are not always easy to understand - maybe the venus and mars thing... It's good that he did help a lot before diagnosis and is a sign that he cares. From the outside looking in it sounds as if he is "dealing" with the significance of a "lifelong, incurable" disease by completely ignoring it. It is a surprisingly common defense mechanism and it may take him quite a while to be able to come round to how things are and what help and understanding you need. As you say, before dx he was "fighting" for you and that's half the problem. A lot of men believe that if there's a problem you fix it. End of. Lupus isn't like that and that completely throws them, they don't know what to do and because they can't help they end up feeling useless and that often comes out in the wrong way.

I don't know if that is what is going on but just a thought. Diagnosis and the months following are very hard for us to handle as we see our whole life changing and sometimes crashing around our ears. The thing we sometimes forget is that, in a different way, it can be very hard for those who love us too. At that time we are also often a lot more "self-absorbed", we don't have the time or energy to devote to being loving to someone... and many of us withdraw when we feel bad. A whole mix of things that really don't help.

One thing that can be very helpful is to see if he would be willing to go and see a counsellor with you. It might be very beneficial to both and get you working together rather than in opposite directions.

many tender hugs :hug:
Katharine

 

[dixy]

Hi Jules Bless

I Find my GP is lost with SLE and ctd. After all they are not specialists in that field. I see my Rheumy every 3 months now at the start it was monthly till the meds were sorted. Also they order more detailed bloods to check on your illness.

Hubby well the men take it hard and deal with stuff different. Maybe write him a letter on how u r feeling and would like to talk things over.

Yes I know flowers are nice but at times Ive felt like jumping up and down on them in frustration.

Big hugs things always work out in the end one way or another

Take care

dixy

 

[lin]

Hi, im so sorry your hubby is not giving you the help you need, that must be so hard on you

As for the gp being able to treat the sle, i dont think on his won he could, for one he cant prescribe some of the meds stright off, only your specailst can do that i would think..

and who would order your mri's?? gp cant, and like i think katharine just said, your bloods, bot the noms the lupus ones the rheumy does them too.

I love my gp he's great wouldnt know what to do if he left, as he understands and he's keyd into lupus but....... i think we still need are rheumys


alll the best Lin xxx

 

[onetay]

Jules,
I would talk with the gp before making any changes and be sure that You would be cared for in the best way. If it is a go than talk with the consultant and tell them that you would still like to be seen by them from time to time but that you feel more comfortable with your gp and that they have agreed to treat you for the most part. Sometimes they don't have all the knowledge needed to handle the lupus and that way you would leave the door open if you did need to be seen by the other doctor for any reason. You can set it up so you see the gp most of the time and the other doctor once a year unless otherwise needed. You want the best treatment for you that you can get.

As for the husband it has been a blow to him also. This is not the same person he married and chronic illnesses can affect even the family of the person dx. I would give it some time and then try again. Ignoring the lupus will not make it go away and won't make things the way it was before. We have no choice our bodies make us deal with it but family on the other hand don't get the benefit of the body telling them to deal with it.

I hope that things work out well for you and the things get back to your normal soon.

 

[Pink Pearl]

Hi Jules,
As the others have said, your hubby is in major denial. Unending is very hard for many men to deal with. I don't think if it is just your hubby, as my dad went thru it as well. Twenty years later and he still has a hard time understanding/accepting all that goes on with sle. That doesn't put him out in the cold, however, many of us have trouble understanding it!

In getting your hubby to aid in the house care and daughters, perhaps it would help to make a list of things needing done, and the ones you need help with. Explain to him that you can only do "x,y,z" and really need his help with "a,b,c....." If he is not able/willing to help, then let him know you will have to hire help. One or the other, there isn't a 3rd option. Either he helps, or you pay someone as you are not able to do all that you used to do. To do it all on one day, you will be in bed for 3 days which leaves the responsibility from those days in his lap. His choice, a or b.

As far as your GP, IF he does the research, and touches base with the rheumy, etc, and you are comfortable, it is totally up to you and the GP. I don't know that I would choose that, but if you are most comfortable with him, then it is your call. Have you talked to him about being the prime doctor? What is his take? If you want to have him coordinating your medical care, what parameters is he willing to work with? I would want those clearly defined before you and he get going and then need to have more experience brought on board.

Good luck,
Sally

 

[Jules123456]

Hi ya everyone
Thank you so much for your kind replies. I would be lost right now without the expertise of you guys.

The question of why I only see dermatology has crossed my mind as well, the doc seems to just want to keep me to herself and not involve anyone else this was my opinion before the dx as well. Do most of you see the rhumey as well?

I have been for my blood doing today as well as another ladies test we all dread and during my time there it has come to light that I now have high blood pressure which needs to be checked again in a week. Talk about needing to be put in a bag and given a shake up ehh :rotfl:

I am going to try and book an appointment with my GP on Friday and have good talk to him and bring in hubby to hear what he has to say. I just feel like I need someone "local" on side now as I feel so lost with all of this.

I have started making a mental list of the jobs I find hard, bet I have forgot by tomorrow though. If I didn't laugh at myself right now I would just cry for days!! I think maybe the hardest part of all of this is the dealing with the jobs many others would you not find difficult like pegging out the washing, bringing in it and folding it up. Not even going to go in the direction of ironing I really think maybe I need to be a bit more clear in the areas I need need help in rather than hoping that a sigh here or there will get the help I need. Maybe I am just too proud to ask for the help I need which does not help me or even those around me I get irritated with.

Maybe I need to spell it out more clearly for Tony what I need help with, well not just Tony but the family around me. I think what really got to me more than anything is last night one of my daughters came down for a drink and said "Mummy when you are well and don't have this Lupus anymore can we do" this, that and the other. I had to explain that Mummy will always have Lupus and god love her she asked all the questions I wanted the "grown ups" to ask for the last month. In her own innocent little chatter she made me feel so loved and cared for and when she had gone back to her little bed I cried for making me feel so very, very loved.

I hope that you are all having a brilliant evening and I will talk to you all very soon

Once again thank you for kind replies

Hugs
Jules
XXX

 

[pollianna]

Aww Jules yr little one's coment really touched me, bless her heart. Maybe if you sit the kids down and say for eg, I can't do things that are too tiring but plz all make a list of the things you might want to do with me and Ii can tell you which ones we might be able to choose from when I am well enough? Then at least you won't find yourself having to constantly say NO to their requests and feel guilty. I found this out the hard way

Your hubby almost certainly is in denial. My daughter who is almost 20 has known me sick for the last 10yrs or so / She saw me instantly 80 percent disabled and unable to walk for 3 yrs after a car crash, saw me struggle to get better only to be struck down by CTD......immediately this yr when I was diagnosed she refuses to even discuiss or acknowledge my illness or how it affects me.....

My GP refused to change my meds recently in the ncest possible way. He is sending me back all the way to London when I have told him what they will do is double my dose. still he is reluctant. I would stick with the spcialist as the GP's are really out of their depth with CTD. it's a specialism within a specialism after all.....I am sure tho that a visit to yr GP with yr hubby might still do some good....

Hope yr feelin ok at the mo xx

 

[keebler]

Hi Jules,

My first GP (left the practice) thought he could take care of me. I did that for awhile and quickly realized that his knowledge of lupus was limited. I had him refer me to my current rhumey.

My GP (now) says he will be the ears and sight for all my specialists. He doesn't want to take over complete care with me. He gets a letter every time I go see my rhuemy, so he knows what is going on with my care.

Take care,
Lyn

 

[Lily]

Hi Jules

I too am wondering why you are on Cellcept for starters and no Plaquenil in addition to that? It's a really odd way to go especially for someone with skin and joint problems who doesn't have any organ involvement?

Even if Plaquenil was not enough to help your existing symptoms it would be more usual to be put on something like Methotrexate? Not the stronger Immunosuppressants.

I'm sorry you now have high BP, I was wondering if anyone has done a urinalysis on you to check for hidden kidney problems that might be too early to show up in bloods?

Take care and take it easy,

love
Lily

 

[Katharine]

In answer to your question "Do most of you see a rheumy as well?" - I would say that YES unless we have no systemic involvement and our lupus is ONLY confined to skin problems.

For my part I see a rheumy who is my primary carer, a neuro (who comes a close second) and a pulmologist (just to keep an eye on some problems I had). I see the first two about once every three months.

Some people may have their dermatologist as a primary carer if their skin problems came first but would often then also go to a rheumy if their problems become more widespread. I also know of a few people who see an internist as a primary carer. On the whole, however, lupus and auto-immune diseases are a rheumatology specialisation.

Katharine