Random thoughts on lupus, Rome, Christmas and going online

by Laguna Lupie

When I was first diagnosed with lupus, I spent a lot of time online reading up about the illness and poring through all sorts of blogs (one that I obsessed over was Diary of a Dying Mom by the late Michelle Mayer).  Needless to say, I promptly became so depressed about lupus, autoimmune diseases and all the severe cases of the illness I’ve been reading about online, I was finally told by my family and even my doctors told stay away from the blogs and forums, at least until I calmed down about the whole thing.

Well, anyway, having been forced to stay away from the internet, I then turned to watching all sorts of downloaded television shows my husband procured for me.  I don’t watch TV, it’s not really part of my daily routine but I can honestly say, with no irony whatsoever, that the HBO series Rome saved me from further spiraling into depression.  I spent the rest of December 2012 listless in bed and watching all the episodes of the two seasons of Rome endlessly, repeatedly.  Something about the life struggles of Julius Ceasar and Mark Anthony  – all the blood and sex and death of Ancient Rome– that got me out of myself and had me forget, even for a short while, about lupus.  That time, I had just started taking the anti-malarial plaquenil for my lupus and was told that this drug takes time to kick in (around six months really).  So I rested a lot while dealing with the fatigue, joint pains and the falling hair of lupus (I had my hair cut short since I figured I was going to lose all my hair anyway), waiting for the drug to kick in and trying to avoid being so sad about all the symptoms that did not seem to go away.

ImagePhoto credit: http://upload.wikimedia.org/wikipedia/en/c/cf/Rome_Season_1.jpg

Of course, because I was diagnosed with lupus during the Season of Joy, we ended up having a very quiet Christmas and New Year last year.  I remember watching the lifestyle network and all that frenzy over the holidays and this local celebrity’s wife talking about how she prepares for Christmas and I wondered to myself how would this lady prepare for the holidays if she suddenly found out she had lupus?  Well, lupus was my Scrooge and it said “Bah humbug!” to our Christmas last year.

I love Christmas and I’m one of those people who spend a lot of time and money decorating the house and cooking up feasts for the holidays but this particular holiday was spent in bed, with rheumatism and wrists so painful I couldn’t even brush my teeth without help.  It’s a miracle my husband survived all that brooding and crying and the repeated episodes of Rome.  But survive he/we did.

Image Scenes from our Christmases past 1: Our home made Belen. Depicting the the birth of Christ in a manger. 


Scenes from our Christmases past 2: Simbang Gabi or traditional Christmas Mass in our house.

Now another Christmas is just around the corner and I’m feeling myself going back to my old self –and my old love for Christmas reviving with renewed fervor.  No, the lupus did not go away, and I am not miraculously in remission—it’s the attitude that has changed drastically.  I feel more deeply the need for my family to celebrate the holidays together in happiness while we still can.  And no, it doesn’t have to be grand and expensive and tiring (like my old Christmas productions!) Just Christmas trimmed down to the bare essentials – good food, happy children with presents around a lighted tree and a family together and thankful.

This picture with my best friend Bogart is a reminder of all the good things about Christmas (circa Yuletide 2009)

I am back online as well (with a new blog and everything!), no longer staying away from the blogs and the forums, having realized that as much as there is a ton of information out there about how awful this disease is, how much of a cruel mystery it really is, I have every obligation to write my own story for the wider community of lupus patients.  To speak about how many more of us are living relatively normal—more or less happy lives—despite lupus and with lupus.