firstly here is a ***great BUG HUG***
now take a deep breathe and remember that it is normal to go thru all sorts of emotions! try avoiding panic attacks!
i found my SLE dx in 2003 a 'relief' ... all those symptoms, weird illnesses finally explained.
please hang in there ...
you have found a place where you can come and people have been or can understand what you are going thru.
it is true that you can have a normal life with lupus, any kind of normal you want!
somtimes minor adjustments can give you a better quality life e.g. suncreen/avoiding high uv means less sypmtoms,
learn to avoid triggers
with this dx you have a way forward with treatment options that have been successful with a lot of fellow lupies
trial & tribulations is on all our roads ahead but i think it's how we face them is how we get thru on the other side - i say bring it!
remember to give things time to work, there is no 'miracle cure' but the meds can alleviate symptoms and help manage things,
sometimes we come off, sometimes we need a little help (prednisone etc saves lives ... ive experienced pericarditis)
i am now med free but will need to see gp, ent, gyane. then find new rheumie maybe gastro entorologist?
i manage thru the *flares* hubby mostly v.supportive when he isn't i pick a fight threaten divorce then we dry our tears (then the migraine)
always ran to doctors when i thought *i'm loosing it* but always got thru, still go but not as much (finances - got into big debt and not keen on doing it again) doctors mostly treat me well and offer support and various options!
message boards are really supportive and insightful places
arm yourself with knowledge
organ involvment is the thing to watch for but don't think everyone gets this (wish i could remember the statistics)
i hope you find a good rheumie, one that you can talk to and will also help you thru this period
ive learnt that i can live with lupus and always find a way to cope, sometimes i have to find new ways but i live the challenge
Treat yourself well (eat, rest, take your time, don't push too hard)
you are you own best advocate as only you can hear, feel, listen to your body ... tests only say so much
take a rest/nap when you need
don't feel guilty when you can't get to that chore or look your best when doing grocery shopping ... who cares.
if it doesn't feel good then note it down - amazing how much easier it is to see patterns when you 'journal it'.
kids are amazing bundles of energy - maybe therapy can help everyone talk about
things? or a support group?
try explain things to family - what they can do to help ... chores can be shared and sometimes you get/need days off
above all remember you will be okay!
sometimes even better.
not all days are bad days!
sorry if it sounds like a 'how to' list but just putting it out there ... i live it and i love to live (mostly) - hope you know what i mean!
ps: maybe google 'the spoon theory' made me think about
pps: quiting my corporate job and working with hubby from home was the best health decision i ever made!
Post Edited (Angel MJ) : 5/18/2009 4:15:15 AM (GMT-6)