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Monday, April 29, 2013
Living with Lupus: After One Hundred Days
Logo from this blog.
One hundred days for this lupus flare came and went, and I decided not to count any longer. This is my new normal.
The second round of prednisone wasn't effective, but I escaped through the withdrawals and compromised immune system without losing any teeth this time! Yay!
A few weeks back, my husband loaded me into the car at dusk and drove me through the neighborhood to see spring had sprung. It was glorious!
With more research, I discovered I need sunscreen at all times, UV clothing doesn't hurt, and to not trust shade as rays bounce. Here's what I've learned regarding the sun triggering lupus:
UV causes skin cells to express proteins, which attract antibodies, which attract white blood cells, which attack skin cells, which leads to inflammation in skin and internal organs.
That's the gist. I read that often lupus patients flare from October to April. That seems pretty close to what I experienced with a little head start in September.
I am happy to say the symptoms are still continuing to lessen at a snail's pace. A week or so ago I tried an outing alone and ended up crying in Home Improvement on a couch because I was too sick to get through the checkout line. Today I drove myself to the doctor and back home again without difficulty!
Hopefully, this will be the last lupus update for awhile at On Pointe. Thanks for all your prayers and support. They've meant so much!
Thursday, April 25, 2013
Poetry Friday: The Best Medicine
The Best Medicine
By moon and stars, ears
and smiles, they lift me to laugh
above my illness.
Lorie Ann Grover, 2013
Many thanks to all who have made me laugh during this lupus flare.
Tuesday, April 23, 2013
Friday, April 19, 2013
Wednesday, April 17, 2013
#rockthedrop tomorrow!
April 18, 2013, rgz are celebrating Support Teen Literature Day! In addition to dropping YA titles for readers to discover, consider a book donation to 826NYC to help grow their library. Team with Figment, I Heart Daily, Soho Teen, and 826NYC to celebrate YA lit.
•Follow @readergirlz on twitter and tweet #rockthedrop
•Print out the below bookplate (designed by the super-talented Lindsay Frantz) and drop books in your area on Support Teen Literature Day:
•Donate books to 826NYC:
826NYC
attn: Joan Kim
c/o: readergirlz Rock the Drop
372 Fifth Avenue
Brooklyn, NY 11215
372 Fifth Avenue
Brooklyn, NY 11215
Post pics at our facebook of any books you drop or find! That's the skinny. Now get ready to drop!
Thursday, April 11, 2013
Poetry Friday: Blink
Within the orb of
my eye, pulse living stories,
caught between each blink.
Lorie Ann Grover, 2013
Many congratulations to Zondervan for the launch of their new imprint, Blink! I'm thrilled to be onboard!
Wednesday, April 10, 2013
Monday, April 8, 2013
Living with Lupus: How Very Vampiric
Aha! A quick post to share that I've learned the sun can nab me in the shade and through windows. Artificial light is also a culprit. That said, sunscreen is my new friend, outdoors and indoors, around the clock.
Short trips out at night have been the most successful. How very vampiric, right? You can still see spring in the moonlight.
Approaching 100 days, I'm finding a normal in the slow climb out of the hole. Strangely, as the lupus gradually loses strength, the rheumatoid increases. I find it easier to function with bone pain in a limited way rather than to be knocked completely flat by my entire body. So, I am encouraged.
With difficulty chewing the jaw specialist recommended:
Pretty clever, huh? He also said this is my new normal. Thankfully, much scrumptious food is soft. Just think of giant marshmallows... Anyway, I've been adapting since October 2012, so this isn't new news. And now I have a cookbook to consult.
Hm. Maybe this not chewing is also vampiric. Just staying in style. Here's hoping I bypass the zombie craze. For sure.
I have a few drug potentials in the arsenal, but having had cancer already once, I'm hoping to avoid them. We'll see what must be done. In the meantime, I'm off to simmer soup, sunscreened.
Friday, April 5, 2013
Poetry Friday: 28 Years
28 Years
Calendar pages
collected and stored, our
memories, our life.
Lorie Ann Grover, 2013
Reading Viktor Frankl's, Man's Search for Meaning, I was struck by an illustration he offered. Think of your life as a calendar wherein you tear off a page each day. You have the choice to look at the little that is left of the calendar in your hand or you can store each page in a drawer and dwell on those treasured memories. Lovely, yes?
Here's to 28 years of marriage memories!