I spent all day writing, except when I was organizing some writing, or learning a new writing program. I conceived and wrote the beginnings for 11 new flash fiction pieces. Tomorrow I’ll write the middles, then Wednesday the ends (it’s for an online class). I am currently the calmest I’ve been since, oh, May of 2012 when my mom first got sick. It is really good to spend the day doing something I both really love and am good at. I feel like a real person. It’s nice.
I am feeling awful today. All the driving caught up with me. My hands are on fire, I’m super accident prone, and it’s had to be a rest day. Fortunately I have a comfy blanket and a Greg to watch Netflix with. We are starting to watch Glee. I had intended to watch this with Ree, but he wasn’t interested. Greg was, so we’re fast-forwarding through the boring/sexy stuff, but watching all the singing and dancing parts. 🙂
50 (yes fifty!!)
Things You’ve Never Been Asked.
1. What is the color of your toothbrush?
Blue and white
2. Name someone who made you smile today?
3. What were you doing at 8am today?
Driving to a writers conference
4. What were you doing 45 minutes ago?
Singing a song from A Chorus Line
5. What is your favorite candy bar?
6. Have you ever been to a strip club?
7. What is the last thing you said out loud?
8. What is your favorite ice cream?
Umm… coffee heath bar crunch maybe?
9. What was the last thing you had to drink?
Long Range Pils by Revolver Brewing
10. Do you like your wallet?
Yes, so much!
11. What was the last thing you ate?
A Taco Bueno bean burrito with Taco Bell Hot Sauce
12. Have you bought any new clothes this weekend?
not for me, but for twin boybies
13. The last sporting event you watched?
DCI marching contest
14. What is your favorite flavor of popcorn?
15. Who is the last person you sent a text message to?
16. Ever go camping?
17. Do you take vitamins daily?
18. Do you go to church every Sunday?
19. Do you have a tan?
Not since high school
20. Do you prefer Chinese food over pizza?
21. Do you drink your soda with a straw?
22. What did your last text message say?
23. What are you doing tomorrow?
Church, laundry, dishes, reading about writing
25. Look to your left, what do you see?
26. What color is your watch?
I do not wear a watch
27. What do you think of when you hear “Australia”?
“In a Sunburned Country” by Bill Bryson
29. Do you go in a fast food place or just hit the drive thru?
Drive thru, usually
30. What is your favorite number?
17 or 14, depending on mood
31. Who’s the last person you talked to on the phone?
32. Any plans today?
Rewatch more of season one of ST:TNG and laugh at how derpy Riker is in retrospect
33. How many states have you lived in?
34. Biggest annoyance right now?
Headache from too much wind and heat from driving husbands non-air-conditioned car this afternoon for an hour.
35. Last song you listened to?
‘For Once in My Life’ sung by the cast of Glee
36. Can you say the alphabet backwards?
Sometimes. Prolly not right now.
37. Do you have a maid service clean your house ?
I am the maid service. 🤣
38. Favorite pair of shoes you wear all the time?
Black massage sole flip flops
39. Are you jealous of anyone?
Not really. Maybe people not currently having a headache, if anything.
40. Is anyone jealous of you?
41. Do you love anyone?
So many people! Also cats!
42. Do any of your friends have children?
That is such a weird question.
43. What do you usually do during the day?
Chauffeur my mini-me’s, write novels and short stories, go to the gym, work with PTA’s, clean the house, talk to my friends, snuggle people, pet the cats, eat, breathe, meditate, do homework for writing classes
44. Do you hate anyone that you know right now?
Not people I know. Politicians, yes.
45. Do you use the word ‘hello’ daily?
I probably say it more than a dozen times a day, usually to my poor spouse when I’m half asleep.
46. What color is your car/truck ?
Red/maroon, depending on who you ask (I did not choose it)
48. Are you thinking about someone right now?
Yeah. But when am I not?
49. Have you ever been to Six Flags?
50. How did you get your worst scar?
I have so many. Ummm…. prolly the one on my right knee?
That’s All Folks ♥️
Got up and started driving before at 6am to see the little twin humans on their 1st birthday. Spent the day with Katherine & the twins, hugged the Kelly between her classes, and then drove back home. It took 2.5 hours to get there and nearly 4 to get home [plus a stop for food I’m not counting in there]. Well worth it, though. 🙂
This is basically how I feel every time I get a prompt in writer’s class every week: Everyone else sees the normal bird and writes about it flitting around doing bird things and I see some crazy-assed alien in a shirred off universe and write about that and the whole class goes “what?”
(Update: You’ll have to imagine the comic about the state quarter turned sideways and the image on it looks like a crazy sideways alien-man instead of a bird. It was awesome, but the link died and now I cannot find it.)
We had a delightful board game day today! Lots of people showed up, dragons were played with by a small girl in a hippo mask, a choose your own adventure game was acted out, we found out that several of us are absolutely terrible at charades, and lots of food was eaten. 🙂 thanks to everyone who came!!
Chronic illness style fun: My exciting night has been spent stalking my middle child at the football game via friends posts & videos, listening to top 10 lists on watch mojo with Nick, and generally resting so I can be ready to train new PTA leaders first thing in the morning. 🙂
Nick and I had a rare afternoon movie date this afternoon. We grabbed a super quick lunch at Torchy’s Tacos, wherein I discovered the joy that is the happy corn side dish (unfortunately it was Nick’s- sorry babe!). Then we headed down to Time Square Cinema for the Downton Abbey movie. We’d bought tickets way ahead of time on Fandango, so of course it all had to go wrong. Apparently the movie theatre didn’t think anyone was going to want to see the movie, so they’d only scheduled one theater and the people all revolted and demanded more screenings, so ours got scrapped and moved, so our tickets were hiding in a pile behind the old ticket counter (which is now just the concession stand). We had to wait in the concession line for our tickets, our seats we had picked out online had been given to other people in the meantime, so we ended up sitting in the very front section. The whole thing was chaos because all the seats were messed up, so people had all gone to the places they thought they had tickets, sat in the them, and then had to be moved because when the theater redid the seats, they didn’t do it right at all and just stuck people in willy-nilly, so everyone was having to re-jigger themselves and try to trade seats to sit with the people they came with. This chaos went on all the way through the previews and until the actual movie went on, when everyone finally just shut up and sat where they were.
In any case, The Downton Abbey movie was most excellent. Many super improbable things happened and Maggie Smith was once again deliciously quick witted. We loved every bit of it, although we did yell at a certain character in our heads quite a lot that he was being dim witted. Ah well, at least it ended well. Really, we have watched this show so long that it felt like we went home, some how, like we had gone to see friends that we missed. It was delightful.
Came home to a gas leak at our house. But David got me chocolate, so I sat in the front yard eating Dove minis while waiting for the gas company. Fortunately it was breezy, yet not rainy. The guy showed up, walked inside, and immediately told me it was not the gas line. He did follow up and check everything, just in case, but told me it was the sewer line. Also, in the process, he told me my hot water heater was leaking and that it wasn’t even turned on, which explains the weeks of cold showers we’d been having. I tried calling the sewer people, but they did not answer, it being after 5pm already. Fortunately, the gas guy hadn’t left yet. He had the number for the emergency line, which also didn’t answer. So he called a guy “who knew a guy” and eventually the sewer people sent someone. Of course he wasn’t the right someone, either. This one called his supervisor, who sent someone else. Meanwhile Nick came home. Nick and the new person toured the house, they ran a snake down a drain, and told us that our line is the last one on the line from the sewer, and when it backs up, it backs up into our line, and there’s nothing they can do about it. Yay? So much time and energy for nothing done.
Tonight I learned about how the definition of Rheumatoid Disease has changed in the last 15 years since I was diagnosed from just “joint pain and inflammation” to include all of my vast symptoms over the last five years (including, but not limited to, cardiovascular system issues such as high blood pressure, cerebral ischemia, heart palpitations, and stroke; autonomic system issues such as muscle weakness, muscle spasms, bladder dysfunction, spinal cord dysfunction, and sexual dysfunction; neuropsychological issues such as depression, anxiety, memory loss, brain fog, and lack of focus; demyelation of nerves, including numbness, tingling, spinal cord degeneration, and things that otherwise mimic multiple sclerosis (including brain lesions), swallowing, voice box, and throat swelling issues. Chest pain that is lung related, not cardiovascular in nature and bursitis, both of which is really where I started all those years ago in high school. ).
I read study after study, all from prestigious medical journals, with associated good, data-driven citations. I skipped the small studies with 20 people or less studied because they seemed silly.
I am super angry because I have never once in the last 15 years had a doctor explain any of this to me. Some have said “Oh, you can look it up yourself.” Or “We could print out something about this if you wanted to come back for it.” (Which I did have printed and came back for and it was just a three fold flier with information a decade old on it.)
I am struggling. I have been struggling for a lot of years now. I was diagnosed when my kids were 3-years-old and just under a year old. (There are three kids now, 18, 15, and 12). People treat you differently when you have a chronic illness from people who have something immediate like a heart attack, a surgery, or cancer. If you have something like that, people bring meals, help with child care or transportation, and housework. I have helped many people with that over the years, always to the detriment of my own family, because it was expected because I was a stay-at-home mom “with all the time in the world.” But no one has time for the chronically ill. We are expected to just suck it up and move on with life because our illness goes on and on. People expect us to get used to it, somehow. No one seems to care that we have pain and other issues that make it hard to function. No one wants to help with our meals, children, or housework. We are viewed as lazy and malingering. People and organizations constantly ask us do to things for them because they think we have a ton of unfettered, pain-free time to ourselves.
I am both angry and tired. It doesn’t actually get easier, despite the time I have had to get used to my situation. People are always assuming I have the time and energy to do everything I need to for my own family, plus whatever they don’t have time for because they work full time. I wish I could work full time. I wish I had the luxury of a healthy life. I envy people who can work full time and still take care of their kids and make dinner and run errands (and some of you even work a side hustle. How energetic!). You get these amazing, full lives. I stay home a lot. I have to sleep and rest just to be able to do the bare minimum. I don’t even shower as often as I’d like because it wears me out. It is frequently (read daily) boring and painful and I don’t wish it on anyone, not even people I’m angry with or who have hurt me immeasurably. I like to be positive and to share the good parts of my life with y’all.
I’m not looking for help or pity or anything else really at this point. If you were going to do something for my family, you’ve either done it already or chosen not to. Mostly I just wanted people to see through my eyes for a minute. If you couldn’t help us, at least you could see the kinds of things the chronically ill go through, and maybe consider helping the next chronically ill person you meet. Make the world a little easier for someone else. Because I spend a lot of my time pondering how I can help the next person I meet and I’d like to think that if I can’t help them myself maybe I can help someone else decide to help them. Thanks for reading this long, rambly post. Love you, humans.