View Full Version : How much proof do I need?

06-26-2008, 09:24 AM
Hey folks -
Lauri here. Well, I had alot of kids here yesterday in the pool with my son. I wore sunscreen, but no hat, etc. (foolish, I know). My reasoning was this: I have to see the rheumie today, so if Im in a flare - good, he'll see it. Not really bright thiniking. I had a migraine last night like nobody's business - behind my eyes and ears and down my neck - I hate those headaches. Got really tired again, am tired again today - slept in until 11AM, and super-brainfoggy.
What was I trying to prove? I think there is still part of me that doesnt think I have this, and subconciously Im trying to prove it to myself - lilke SEE? No rash!! Im swollen. Maybe this will help with my appt. - I dont know. My thoght process right now is ridiculous - took medicine and 10 minutes later couldnt remember if I did or not. Abd Im babbling.....Am I making ANY sense at all? I'll keep you guys posted on what happens at docs OK? Thanks for listening....

Love Lauri

06-27-2008, 09:35 AM
You are making perfect sense to us because we all suffer from brain fog like you. The brain fog and babbling seems to be our own secret language and form of communication.
Now, on those rare moments when we are clear-headed, we do what you did.."What the heck was I thinking????" I hope that you learned a valuable lesson and that you do not put your health at risk to prove a point to yourself :lol: But, it is human nature to NOT want an illness and to attempt to do things to prove that you don't have an illness. But, now that you've done your field test and seen the results, do be kinder to yourself in the future.
Let us know how your doctor's appointment goes.

Peace and Blessings

06-27-2008, 10:37 AM
Well, Saysusie, as you have read from another post - the doctors appt went above and beyond what I had expected. I thought he might agree there was something going on - I mean, the blood work shows that - but, he actually Dxd me with seronegative lupus. Thus, my denial was short-lived - lol!! :oops: Its OK, though, as I can officially say that knowing I have this and that I will be treated is a heck of a lot better than being deathly ill and bedridden with no answer in sight.
Ive been through a myriad of difficult things in my life, but I must say that being sick and debilitated - and undiagnosed - has been the most awful, depressing and frustating thing Ive ever had to face. :mad: I know it is very common with this disease, and other autoimmune diseases, but there is just such a sense of injustice to it all. I refuse to live in the past and think "Jeez, had I only been treated sooner, maybe Id be better today" Im a firm believer that things happen to us when they are supposed to and when God feels we are ready to handle them. But there is still part of me that has resentment towards the medical communtiy at large, and their inability to either learn about this disease, or refer us to someone who DOES know about it. :?
I would love to become active in something that would help the Dx process for others. Does anyone know of anytype of research or support group that is encouraging a better Dx process? I would be very interested in knowing about it.
Thanks for letting me vent - and to all of you without official Dx and/or treatment - please dont give up! There is someone out there to help you - persistence is SO DIFFICULT when we are in a flare...I become so apathetic the house could literally fall down around me and I wouldnt even blink! :shock: lol But try and hang in there...my Dx was 10 years in the making...and 10 years of all the "boloney" (lost wages, lost time with children, depression, etc) that goes with it... Have faith..... :wink:
Love and prayers to all -