Living With Lupus: Graphic from Healthline

Got a note from Healthline to share their image to help in the understanding of lupus. So here you go!

Living with Lupus: the Blink Book Tour

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After returning from the Blink Book Tour, I thought to share how it went regarding my physical conditions. It's fascinating that my mind regularly returns to believing my body isn't ill. It convinces me I can push through a rheumatoid or lupus flare...until the door opens, and I'm blasted low.

With a stop in Memphis cancelled, the tour took me to Salt Lake City, Phoenix, and Tempe. The latter was 104 degrees, with blazing sun. Basically, I hid in the shade and shadows until I could be escorted from one event the next. Under a huge hat.

 

Here I'm waiting inside while Jonathan, Jill, and Lisa wait on the patio for our car. I enjoyed the pool at night and camped out between appearances in my room. Twice the door opened to lupus, and I was reminded I was on tour not by my own strength. Thankfully, the door closed before the death eater could suck the life out of me. (Thank you for the image, J.K. Rowling.)

 

My companions were kind, speaking up for me. They'd request to be driven to the front door so I wouldn't have to walk across a sunny parking lot.  

 

Because of Sjogren's Syndrome, I kept my eyes closed during the flights and went through vial after vial of tears in dry Arizona. My eyes still looked like cranraisins. So that's something to try to solve. Restastis helped, but I returned with a bleeding bladder and can no longer take the prescription.

 

That's pretty much how it went down. By grace, I was sustained on the edge of the knife, comforted by travel companions, and invigorated by readers. Let's see how ALA in Vegas goes at the end of the month. Right now, I'm trying to figure out how to get my crinoline through security.

Living with Lupus: Traveling to ALA Midwinter!

So I haven't run a lupus update for a bit. After the 8 month flare of 2013, I seem to only be having 3 day experiences now. They still take me by surprise when they hit. When they do, I try to gather words to describe the sensation, but it's hard to convey. Yet, when it's here, there's no doubt. Here goes: it feels like the flu, with a migraine, as if I weigh 500 lbs, and I'm moving through quicksand. The light hurts, and basically I want to get to the dark. Like a bat. Or a mole. Or a naked mole rat. :~)

Those are the facts as I prepare to hit ALA Midwinter tomorrow through Sunday. For non-librarian types, this is the winter gathering of librarians from around the country to network, inspire, and celebrate books. My signing is in the Blink booth, #737, on Saturday morning at 9:30. Please stop in and say hey! There will be ARCs of Firstborn and rgz frippery, while they last. I hope to see you, and that lupus doesn't make an appearance. Look for my hat!

Living with Lupus: After One Hundred Days

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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!

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.

Living with Lupus: Day 73

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At Day 73, I'm able to look back to Day 50 and see progress! It is at a sloth's speed, and I'm still housebound, and I still crash, but I don't stay at the bottom of the hole quite as long. The next day I don't start at such a low position either. That is worth celebrating!

 

So what brings joy to the day? Bath bombs and rubber ducks. Special delivery Green Tea Fraps, Matcha Blast Jambas, oatmeal, and sweet tea. Sweet cards and letters. Laughter with friends and family. Netflixing The Office and Kindling books like Viktor Frankl's Man's Search for Meaning and Martin Luther's Bondage of the Will. Warm soup and fresh flowers. These are a few of my favorite things. :~)

 

Here's a smattering of wisdom from my recent readings:

 

"Satisfaction comes from the richness of experiencing life and sharing the inner experience of life with others." Rachel Naomi Remen

 

"He who has a WHY to live for can bear with almost any HOW." Nietzsche

 

"There is only one thing that I dread, not to be worthy of my sufferings." Dostoevski

 

"Suffering ceases to be suffering the moment it finds meaning." Viktor Frankl

 

"God is most glorified in us when we are most satisfied in him." John Piper

 

Onward! 



Living With Lupus: Day 50

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Today is Day 50 for this winter, 2013, flare. I'm withdrawing from prednisone, and it appears I'm still wading in the lupus river.

Today's reading was Numbers 11:1 "And when the people complained, it displeased the Lord." There's a definite reminder. Also, I ran across this quote from Dr. Martin Lloyd Jones in his Sermon on the Mount: "It is no small trial to spend weeks and months in the same room; it tests one to the very foundation."

Keeping in mind both quotes, here's what the good, the bad, and the ugly look like in a few words.

The Good: sitting up, periodically moving about inside the house, writing, reading, chatting with visitors, weakness and mild flu symptoms.

The Bad: in bed, blinds drawn, hat to block the light, sunglasses to look at the computer, chills, migraine, strong flu symptoms.

The Ugly: heightened symptoms, waiting in the dark.

Right now, all three can happen in one day. And of course there's good in the bad and ugly as well. So, this is a waiting time: waiting to see which symptoms are lupus and which are temporary withdrawals from prednisone, waiting for the steroid to clear my system to confirm there are no cancer markers, waiting to see what the next moment feels like, waiting to see what God would have.

Thanks for remembering me in your thoughts, prayers, and visits.over 50 days You are so encouraging! xox