I guess it dles mean lupus is progressing

I guess it dles mean lupus is progressing

Went to Dr yesterday, Dr came in with a face that you know is not good. Lupus is rightly positive duh! And levels are rising , liver N blood high and I'm losing blood again, boils on my neck 3 of them and now 2 more under my arms. High risk for stroke and kidney like WTF! Excuse my English , but how can I not stress. And to top it off I might have to get surgery on. Neck because they are to close to my arteries!! Please tell me what am I going to do ?? He thinks I'm trying to hurt myself becAuse of all ths things I've been through in the past yr, and says I'm not taking care of myself. I'm maybe I am I'm not sure any more this is just driving me insane mentally😢

14 Replies

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  • Hello lilrosie1,

    Sorry to hear that you are really being put through it there :(

    What are the things that help you to cope with all this? Have you ever considered getting some kind of professional advice to help you cope with the psychological strain of it all? I don't know where you are based, but maybe you could ask your doctor for ideas or even a referral on this? In the UK, some Expert Patients Programmes are good - they are usually made up of groups of people with chronic conditions and they sometimes have a big emphasis on the psychological side of things? Or maybe just some sort of counselling? x

  • I'm coping all by myself I got no one

  • Hi Lilrosie1,

    It may be worth talking to your doctor and seeing if they are able to offer any additional support, such as a referral for counselling or psychotherapy.

    Whereabouts do you live? It may help to go along to a local support group meeting to chat with other people who have similar experiences?

  • Aww poor you. I know it's hard but you have to try and look after yourself. I've had lupus since 2004. I know things gets you down when you have lupus. I manage to carry two beautiful children 😀 God bless you 🙏 hang on on there x

  • Has anyone ever gotten boils on there neck?

  • Hi - yes, on neck, face and legs - feel your pain x

  • How do you make them go away I don't even want to be in oublic

  • Have not got any tips really - just another thing we have to live with - sorry I can't be more help x

  • Omg do they ever go away? Or do we get them forever

  • I have gone long periods without them but mine have left scars - we have to lose all vanity don't we! Haven't had one for about 6 months. Are you on any medication? X

  • No just anti bioitcs

  • Mine have been better since being on hydrox. Do you know what the medical plan for you is re medication? I can hear how fed up you are and sympathise x

  • No not yet next month ill knoe

  • Hope you get what you need! X

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