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Television & Film, What I Love

Downton Abbey Movie!!

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.

Around the House

Afternoon house adventure

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.

health, My Own Personal Weirdness

The Definition of Rheumatoid Disease Has Changed

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.

Friend Time

An Actual Exciting Friday Night

Tonight I sat reading a writing book in blissful silence when suddenly sometime after 8:30, the doorbell rang, waking two of three sleeping people up— it was the Amazon delivery that had been marked as delivered several hours before that had never shown up. The sleepy humans came out, ate dinner, and then we sat around reading silly memes to each other for more than an hour until it was time to get Greg. Greg got into the car and said “I had a great time at the dance, but all my friends are going to Whataburger now, Mom. It’s tradition!” So me and my sleepy self sat at the mom table and watched my kid interact with his friends. (Boys move around way more than the girls) Met some nice moms I’d never met and saw some familiar faces, too.

I Really Do Cook

Yummy Food Thoughts

Had this beautiful realization today that I could cook all those veggies that I love that the kids don’t during my lunch time. 🙂 Like onions, mushrooms, cabbage….Why have I never thought of this before?!?

health, The Past Comes Back to Haunt Me

Health Woes, again

Saw the neurologist today. Apparently I’m having one of those rare drug interactions no one else gets. Symptoms include erratically high and low blood pressure, chest pain, numbness & tingling, dizziness, memory loss, slurred speech, muscle & joint pain, muscle spasms, and ringing in the ears. So that explains just about everything except the weird spiderwebby nerve-feelings in my knees, which might be explained by my use of all the weird new equipment my gym has recently brought in to replace the stuff I used to use. Picked up my new meds, but it’ll be 2 weeks (according to the neurologist, or more, according to the pharmacist) before I’m ready for exciting life events again. So if you’ve seen/continue to see me dropping off the radar for the next few weeks, now you know why.

My Own Personal Weirdness, The Past Comes Back to Haunt Me, Writing

Transcriptions

In this week’s Fun Things I Do In The Car While Waiting For My Kids: transcribing writing from old notebooks into the computer using Google Voice. You might think autocorrect is the height of frustration, but it pales in comparison to Google Voice’s misunderstanding of my not-quite-Southern-not-quite-MidWestern drawl.

Everywhere But Home, Family Time, Music

One Crazy Night!

One crazy night! Started off at Greg’s school for dinner from a taco truck and then headed over to Ree’s school for Parent Marcher Night and then headed back to Greg’s school to finish out Meet the Teacher with him and Nick. At one point I was talking to a teacher and completely forgot the word “Mom.” Oh my goodness. Finished out the night with a sno-cone. Mmmm….

 

Music

Tearing Up for Good Reasons

This afternoon I am tearing up because of this: David got a call from one of his former freshmen in band today. The kid didn’t have anyone to come to Parent Marcher night for him and he called and asked David to be his person. Of course he said yes.

I Really Do Cook, My Own Personal Weirdness, Parenting

Protein Enriched Muffins of Joy

You know me and my muffin experiments. Today I was trying to make healthier ones that tasted good and were a bit more fiber and protein filled (no one ate veggies yesterday because we were away from home and the food choices were not ours and today is a LONG day). The kids ate these super fast and raved about them.

Preheat oven to 400F.

Dry:
1 1/2 cup generic white flour
1/2 cup chocolate flavored protein powder
1 serving scoop orange flavored fiber powder
1 TBL ground flaxseed
1/4 cup sugar
1/4 tsp kosher salt
1 TBL aluminum free baking powder
1/2 cup semi-sweet chocolate chips

Wet:
1/2 tsp orange flavoring
1 cup 2% milk
1 large egg
2 TBL expellier pressed canola oil

Mix the dry and wet separately, then combine, scoop into greased muffin tins, and bake for 12 minutes or until nicely browned on top. These get pretty brown and slightly shiny, unlike my regular muffins.