View Full Version : Greetings, all (former lurker --> new member)

02-17-2014, 09:38 AM
Greetings, all! I am new to this community, though I've browsed the messages quite a bit over the last year (and found lots of good information, too--thank you). I figure it I'm going to be looking for info here, I might as well participate, rather than just lurking around indefinitely!

I am 43, married, work full time in a technical field. I was diagnosed with UCTD in spring 2013, which resolved to SLE in late summer. Been on Plaquenil for about 8 months and Prednisone off and on for about the same amount of time. I've started having some pretty serious cognitive issues--they have been shocking and scary, like nothing I've ever experienced, and they seem to return whenever my steroid dose is decreased. I feel like my IQ has dropped 50 points and am terrified of losing my job because of it--never thought I'd say it, but I would gladly take the joint pain, fatigue, and skin issues combined, if only I could stave off the mental decline. I am supposed to start on Imuran as soon as my bloodwork confirm that it'll be "safe" to do so. Pretty frightened about it, though...not sure what "safe" means, given some of the published side effects...

Anyway, I'm glad to have found this site, and am forward to meeting you all "in person." :)

02-17-2014, 05:20 PM
hi and welcome,
it is good when our lurkers become family.
please ask questions as you need

02-18-2014, 01:08 PM
Hello and welcome! I am so glad you joined!

Your post actually ally made me tear up a bit because this is the reason I came to WHL and it is the reason I am here now. Sometimes we need to find people that understand and you just did. I have a kind of Lupus called CNS Lupus and it has affected my mental capabilities so the comment about almost in wishing for the joint pain is one I understand well.

I tell people on bad days "I used to be smart". Truth is, I am as are you. Whether it is Lupus with brain fog or the rare CNS like I have when you go from a "normal" person to placing the milk in the pantry or not being able to remember what is on the dinner plate you just read from the menu it makes you self conscious.

Getting your flare under control should help that. I wish you luck with the new meds and please keep us posted! you are now a member of the WHL family and once again we are really glad you came out of hiding!

02-20-2014, 09:55 AM
Hello and Welcome;
I, too, am glad that you decided to join us. As you can see, you are not alone here and this place is filled with people who understand and/or who are going through the same things.
Most of us, to some extent, have cognitive issues with our Lupus. Some of us, as Mari has shared, deal with them more severely than others. She has been through so much, yet she continues to come here to help others. That is what WHL is all about.
I do hope that, once your current flare-up is a bit more under control, that your issues begin to improve a bit. Please know that we are here to help you in any way that we come. Once again....welcome to our family.

Peace and Blessings

02-24-2014, 11:21 AM
Thanks so very much for the kind and welcoming words! What a wonderful board! For sure, this is like no other community/forum that I've wandered across so far--so glad to have found you all. :)

Although of course I'm saddened that you seem understand so well what I'm talking about--especially about the cognitive issues--it really is comforting to know that there are others who understand, and who can not only sympathize, but empathize. Also, it's nice know that when I have questions (which happens a lot as this new symptom or that one takes the stage) there are folks who can answer from a perspective that only experience can give. I do read up as much as I can, but sometimes wind up having more questions than when I started...

I have nothing much else to say at the moment, except thanks again--and peace and blessings to you all, as well.