Monday, July 15, 2013

On planning and being foiled by lupus- --

Well, it's been a while since I've posted here. I've been unusually symptom free for quite a while, until Friday. And I'm ticked off about that. I've vowed not to complain in my blogs, and so far have succeeded, but this time, I need to vent. About this damned medical condition known as SLE - Lupus.
I've generally managed to toss off any symptoms showing me I'm in a flare, but let's face it...some flares are worse than others, and-- dare I say it-- I'm also 75 freakin' years old....been living with this wolf for 25 freakin' years, now, so you would think I should know what I can and what I can't do. Heh.
I missed out on a great writer's conference just down the road from me here in Fort Worth. It was in Denton TX, about 50 miles up I35, so I figured I could do that. I planned very carefully how to present my books for sale, what I would wear, and was looking forward to meeting other writers.
So I arrived about 3 PM on Friday where we were instructed to set up our book display, mix and mingle with other writers, and then have a nice buffet dinner. So far, so good.
I finished setting up my books, then went to the bar for a nice cool drink. Settled on the vending machine around the corner where I could purchase a bottled Margarita. Cool! So I nursed it for a couple of hours and visited with others. Standing at the bar area. I set my bottled Margarita on the bar -- or so I thought. It fell to the terrazzo floor, bouncing at least four times, causing everyone to glance my way. It didn't break. The bartender picked it up and trashed it, while my fellow writers broke out in applause. I gave a mock bow and said, "Thank you. Now, for my next trick...." and they all laughed and returned to their conversations, as did I.
But I worried a bit about losing my grip on the bottle, and I realized I had been shaking for about a week; nothing noticeable, unless you count my son wondering why I was shaking all the hands particularly have been unable to keep a grasp on anything, and they shake when I try.
As I stood in the crowd, I thought maybe I should sit down, so the person I was talking with also went to a table and sat with me. It was difficult to converse, due to the 100 people confined in a small area, the television blaring a baseball game and some sort of music   coming from another area. That's when I remembered that's why I don't like large parties, or gatherings of that nature. It's too hard to hear the person next to me, and they can't hear me, either, so I end up frustrated at even trying to talk and respond.
It was also tricky at the buffet line....Trying to balance a salad plate with one shaky hand and spoon the pasta onto another plate in another shaky hand is not fun. Then I came to the desserts.
A wonderful selection of cakes to choose from. I was wishing for a third hand as I attempted to scoop up a nice piece of carrot cake with creamy icing.
I was holding up the line trying to do this, but I finally succeeded in  placing a nice slice of cake on yet another plate and balanced them all -- successfully, I might add-- to the table my newly acquired friend and I were sharing with a nice couple from NC.
All this time, I was becoming weaker and weaker, and it was very warm in the small space allotted to us. More attempts at conversation followed, but I'm afraid my end of it consisted of: "Sorry. What did you say?" And, with my new dentures in my mouth that still need one more adjustment, I realized I was pretty hard to understand, too. So right after dinner and the welcoming speech from the organizer, I whispered my "goodbyes" to the persons around me and slipped out the door.
The shaking was even worse by that time. I wondered if I could drive home. I succeeded in blocking the setting sun out of my eyes, and then the darkness descended. Everyone was trying to get in front of me, even though I was hitting the max. speed limit. Barriers on the road indicated a narrowing of one stretch of the interstate from three lanes to two, then two lanes to one. ARRGHH. I'm convinced all the other drivers are out to get me. Talk about Defensive Driving!
I arrived home somewhat later than I thought I would, and went straight to bed. The next morning, Saturday, I was supposed to leave my house no later than 8:00 AM. At 7:00, my son knocked on my door and asked why I wasn't up yet. I mumbled "I'm not going. I feel awful." And I turned over and went back to sleep. I napped throughout the day and then managed to meet two of my dearest friends for dinner we had planned for quite a while. No way was I going to miss that. So I went to meet them, ate a bit of veal Parmesan, and then went back home and crawled into bed.
Sunday morning, having texted the host of the conference on Saturday evening telling him I couldn't attend on Saturday, but would return on Sunday about noon to pick up my books, my son and I set out for the Hilton Garden Inn in Denton TX. (I felt too weak to drive and to pack up my books.)
I asked the host if I had sold any books and he said he didn't know, but would tell me when everything was over and accounted for. It sure didn't look like I had sold even one book. A big disappointment. Back home, I had a bit of lunch and returned to my bed.
Okay, it's now Monday afternoon and I'm feeling somewhat better. 
So what did I learn?
First, a writer's conference is really not the optimum venue for selling one's books. A lot of folks looked at my selection, but I didn't seen anyone buying. (There were some girls there to accept payment) I did the same thing....I looked at what other writers were peddling, but I didn't buy anything, either. Lesson Number One.
Second, and this is the hardest lesson learned: I learned that a 75 year old woman with lupus cannot bear such stress and come out without some having some damage done to her poor body. I had some sense of "trembling" a couple of days before I set out, but my old friend Denial had ignored it. I'm okay. I'm not That Bad. I asked myself the same thing I have asked other Lupies: "How bad IS that bad?" 
Today is Monday afternoon. I'm still shaking. My bed is beckoning me to climb in and nap a little. But first, I have to call my doctor's office and make an appointment to see what's going on. No doubt I will have to have some tests done; I'm wondering if it's something neurological. Then again, I'm wondering if a healthy woman my age would suffer the same symptoms?
At any rate, I'll now have to evaluate each "excursion" according to my present state -- I had already started out with one strike against me -- that of shaking -- and the possible consequences that would bring. I told myself that just talking to other writers wouldn't be stressful, but I didn't factor in the driving mileage, the noise level, and the stress of trying to make conversation in a crowded environment.
My friends, God bless them, told me they couldn't have done that without some damage to their own aging bodies.
Sometimes it's life. Sometimes it's lupus.
I have to adjust to both. Dammit.

1 comment:

  1. I have lupus and have been having a difficult time - i'm now have A-Fib (heart stuff) Antiphosphid Lipid syndrom and low blood platelet count. But yes, the pain due to things we wouldn't even think twice about. When its hot and humid - hm not good. Have tried to listen to my body - but sometimes my body just does what it wants. but I did have a great run of about 10 years before having a bad attack. But we keep trucking don't we. That's how we are