Just diagnosed with SS this past Friday, where do I go from here?!?

Hi  Liz ~

I'm so sorry to hear you're dealing with so much!  As far as the Sjogrens, I take it one day at a time.  Don't panic as your kids will worry and may not tell you something bc it might upset you, you know?  Lupus, I'm borderline and I have stage 4 Sarcoidosis...the reason I'm writing all this is because life does go on and you have the power to make it a great one or be lost in your illness.  

I realize that it's easy to say  bc I'm not in your shoes, reality, I am wearing pretty much the same shoes.  As far as you being dx'd with two autoimmune problems, many who have one dx most likely will get another...not always but from what I was told by my doctor.

Take a deep breath and calm yourself down for your kids.  There's nothing to worry about bc this day and age, they've come a long way with treatments.  Wait and see what your tests say and go from there.  I would, if you don't mind me butting in, after you get your dx, tell you kids.  Sit them down and explain what SS and Lupus is.  They most likely will look on the internet but if they hear it from you, it would be that more meaningful.

Okay, Liz, I'm going to jump off my soapbox and let you know if you need anyone to talk to or anyone to help talk you through something, feel free to send me a private message, I'd be happy to  help.

Here's to a great report!

Frustrated

Ive got both, I know it is hard to say but the key is rest, if you can gather your family around one night and explain what you have and what you have to do, you can even pull stuff off the internet and hand them out, then you can ask your family or friends to help with different things, I have all of them, F.B Rhumatoid, and a lot more than that, if I can advise you any more I will xx

Frustrated61 has some wise words. I know the unknown can feel overwhelming especialy when you have such respponsibilities, but the best advice i can give after 33 years of SS is to look after yourself whilst taking one step at a time. Don't anticipate troubles. Deal with each new symptom as it comes. Not everyone develops multiple symptoms. Not everyone develops the most difficult symptoms. If you do, deal with it. If you dont, move forward with your life positively, incorproating your symptoms as best you can. I have many coping mechanisms, most of which are not public knowledge. If you spend too much time living in what-ifs, you are robbing yourself of life as full as possible. Last advice, surround your self with the best doctors you can. Ones who are up to date, non-dismissive, and who you feel comfortable talking to. Best wishes. 

Hi Liz, good advise from everyone and I'd like to add my own, firstly please please remember that this condition effects everyone differently and you may not suffer as badly as someone else with the exact diagnosis, secondly, and I think it's the most important, try not to stress because I firmly believe this is the biggest cause of flares, when I was first diagnosed I had some pain in my joints, dryness was a bigger problem and fatigue but as soon as I was given the prognosis I very quickly became very ill. It was only after reading some great advice on this forum, ( and ignoring some) that I decided it is not a death sentence It does go into remission and you can have long periods of good health, I've been relatively symptom free for nearly a year, I don't take the prescribed meds because I can't but I manage any pain with paracetamol and ibuprofen alternatively every two hours, I use biotin toothpaste and mouthwash for dry mouth and hylo forte eye drops for dry eyes, I take a good multivitimin with a probiotic ( improving and supporting your immune system is essential) magnesium with Vitiamin B ,  Gensing and Vitiamin c all for fatigue. And as everyone has already said rest when you need to or at least s often as you can, walk in the fresh air but most of all try not to panic it most likely won't be as bad as you think and as was said before there are great advancements being made on a daily basis, your bigger than this don't let it define who you are, finally use this forum, share your problems and vent your frustrations but only take the positive to heart, best of luck.

I'm one of the unlucky ones who cant take Ibrufen of any thing like because I suffer from Cirroses of the Liver due to my Imune system attacking it, as I said I have several medical issues apare from Lupus and Sjogrens, my does not go into remission, because of the other medical issues trigger them off, it's like a knock on affect, with the illnesses Iv'e got I will be in a wheelchair before long but I'm still happy and fighting all the way, Don't give in to it just rest when you have to, listen to your body xxxx