New and would like some ideas

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New Member

Date Joined Nov 2011
Total Posts : 13
   Posted 12/12/2011 11:38 AM (GMT -6)   
Well here we go was diagnosed 3 months ago with Lupus, lucky so far just the skin. Went to Rheumy and was told I had a few things going on. Lupus, Fibro, and sojgern . She put me on the plaquenil. I started the meds. about 2 weeks ago. The first week I did not seem as tired. but I guess I over did it because not only am I tired I think I had a flare. Not sure you look at pictures on the web and it might look like it. It was red then turned like a purple and brown and raised around my nose it was gross makeup could not hide it. it is starting to go away I did take a picture to show the rheumy. Did not know what doctor to go see dermo. Rheumy or family doctor.
This whole thing is so confusing. The memory loss and times I feel family is taking advantage of that. The pain at times just makes you want to cry.
Everyone still expects me to get the house ready for the holidays and get all the gifts and make the holidays great like I always do. Problem is I go to two stores and I am wiped out can't seem to do anything else after that.
can anyone tell me how to get through the holidays and what else I can expect from Lupus.
normally have a very positive attitude but with the holidays it is starting to get to me. And guess I have not been very nice lately.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 12/12/2011 5:49 PM (GMT -6)   
You probably need to see the rheumy about the facial aberration. Not that many dermatologists are experienced with Lupus, unless you happen to be in a largely populated area (big city) they might be difficult to find. You didn't' say when your next appointment is, but in general whenever you have new or changed symptoms it is good the check in with the Dr.

If you are exhausted after 2 stores to need to take care of yourself and REST. Stress really exacerbates Lupus, so you may be feeling worse just because of the season and they expectations. Find ways to minimize stress.

Telling them you are tired isn't the same as showing them you are tired. Maybe you can try delegating some tasks? And don't let yourself pick up the slack! Lupus is a hard disease to *see* and most of us our families don't really get it until they can see how tired we are.

Take care of yourself FIRST! Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/12/2011 6:55 PM (GMT -6)   
On-line shopping is a great way to shop. Just get them shipped to you.
If you have a young teen you can let them wrap everyone's present but theirs. I remember feeling very grownup being trusted to wrap presents for everyone.

If you have grown children have them help out by bringing in covered dishes for the Christmas meal.

Hand the outside decorations to your husband and tell him he's in charge of the outside then go sit down. :)
This year is my first "Lupus Christmas". I tried to keep the decorations to a minimum and limited my shopping to small trips of no more than an hour.

New Member

Date Joined Nov 2011
Total Posts : 13
   Posted 12/13/2011 8:00 AM (GMT -6)   
Thank you for the ideas and reply's it is a big help. And I am learning by what I read on the post and as things start happening.
I have two really good doctors. the Rheumy I'm still on the fence so far not impressed. She knows her stuff but not impressed on her bedside manners with her patients.
I was really hoping the answer was dermo.
I am learning the word no and not to commit to anything.
Funny I have fibro. with this you are to get up walk exercise to keep from getting stiff.
Lupus you are to rest when body says too much and clear your mind of all stress and try to be active
trying to learn the balance between both has been interesting to say the least.
I am trying so hard to stay positive and feel I will be. But with the holidays here that I love so much seeing my body won't do what I need it to do really blows. And just like me, my family is having to go through the learning and the changes that are happening. Not an easy task on anyone. I do on most days have good support. But like anyone that can not feel what we feel it can be hard to understand.
Hope you both have a great Holiday and thank you
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