Luke has a band performance at school tomorrow night and I cannot attend. Someone has to visit FatherInLaw – bring food, change bed sheets, change the sheets to shield the furniture from chemo sweat, plant 30+ cantaloupe… Yes, FatherInLaw wants the cantaloupe planted tomorrow.
Jonathan is taking Luke to the band concert largely because I’m FatherInLaw’s cook and responsible for organizing and bringing the food. Jonathan always forgets to bring the food delivery when he visits. Jonathan forgets most things, actually.
FatherInLaw lives in a tiny house. A literal tiny house like the variety you see featured on Pinterest. Tiny houses have tiny water heaters and the tiny water heater at FatherInLaw’s is broken. In addition to being FatherInLaw’s personal chef, I’m also his laundry and dishwashing service.
Everything keeps piling up. Piles upon piles for things to do and things to buy and things that are needed and I just can’t do or afford them all.
FatherInLaw has lost 20lbs in two weeks. I’m responsible for ensuring that he eats better largely because I know the most about cooking and do not have 5 children. SIL2 has 5 children. SIL1 only has 2 children – one is 22 and the other is 4.
Now, in addition to working 50hrs a week, being completely responsible for cleaning the house myself, being primarily responsible for the care of Luke and Oliver, as well as the care of 5 cats and 3 dogs, …oh, and having 2 chronic illnesses…I’m also responsible for cooking an entirely separate menu for a week at a time.
On days like today I feel like crying. Except I don’t cry. Not really cry the way other people cry with tears and wrenching sobs. I don’t cry the type of cry where people can “let it out” and feel better afterwards. Sometimes I shed a tear. Sometimes 2 tears roll slowly down my cheeks. There are no sobs; no ugly cry. My voice doesn’t shake. I don’t feel better afterwards.
Every once in a while, if I cry hard, I have flashbacks of my mother hitting me and screaming at me for crying. Which, of course, only makes crying worse. I can hear my mom screaming how “dramatic” I am or how I’m a “cry baby” who “whines all the time” just before hitting me to “give me something to really cry about”. The flashbacks only compound the existing feelings of misery.
For our 2 year anniversary, Jonathan researched restaurants I might like and we drove to a small town about an hour from where we live to have brunch and visit a small strip of locally owned shops. He bought candles for me at the shop – sandalwood candles.
When I was 17, my mother kicked me out of the house and I lived with a friend for a while. Her family had a tiny spare room which I stayed in. I’d never had my own room before. I’d never had privacy or a door to close or a space to consider my own. The tiny room smelled like the single sandalwood candle I carried out of my mother’s house in a laundry basket. I didn’t own a suitcase.
Sandalwood smells like home. Well, the way “home” should smell if home didn’t smell like garbage, urine, stale cigarette smoke, mildew, and dirty dishes. Sandalwood smells like the way a home that I wanted to live in would smell: Calm, clean, and peaceful. Jonathan doesn’t know what sandalwood smells like home. I doubt I will ever tell him. He just knows I like sandalwood.
Tomorrow FatherInLaw gets admitted to the hospital for his first round of chemo. The oncologist is hoping to shrink his tumors to prolong FatherInLaw’s life for a few more years. Without chemo, he’s expected to live only four months.
Jonathan’s grief comes in waves. Grief comes in waves. Jonathan often sleeps on the couch because he struggles with insomnia, but lately he’s slept in bed with me. Sometimes it helps to be close to the person you love when someone else you love is dying.
At first work was understanding of the situation with FatherInLaw, but not anymore. I’m not permitted to work off site anymore. Also, I’m required to write a paragraph explaining what I am planning to do with my day off. This bothers me. On one hand, the company wants “all our personal problems dropped at the door” but then they do things like demand a detailed explanation of what I plan to do with my personal time. What a contradiction.
The washing machine is dying. The motor is dying, specifically. The manufacturer doesn’t make the motor for that model anymore. A replacement is required. I don’t have money for a replacement. I don’t have money to go to the laundromat either at $30 a week and a 40min drive each way.
One cat and one dog fell ill last week. The cat couldn’t keep food down and the dog had bronchitis so I took them both to the vet. The bill came to $700 in total. At least I have 2 living pets on the way to wellness even though I had to charge the bill to a credit card. I requested Revolution for the cat we took to the vet but used it on a 3rd cat who has ear mites. Although I feel guilty for conning the vet, I literally can’t afford to take 3 animals to the vet especially for a minor problem like ear mites.
My father in law is dying. He’s 64. For the past few months he hasn’t been feeling well. Kidney infections, difficulty passing stool, difficulty sleeping because of the pain… Much like my family, Jonathan’s family doesn’t believe in modern medicine and FatherInLaw wouldn’t go to the doctor. After FatherInLaw’s uncle died last week, he finally went to the hospital. His body is riddled with malignant tumors. FatherInLaw may come home tomorrow so Jonathan and his family have been cleaning FatherInLaw’s house – it was filled with mold and mildew from running the gas heater without a humidifier.
The situation with the Oliver and Luke is better. After several weeks of having Jonathan as the “primary parent” – the one who assigns chores, plans meals, disciplines, and makes plans – the kids decided that I should resume “primary parent” duties. They said Jonathan’s parenting method leaves them confused and they don’t like it when Jonathan gets frustrated and shouts.
The kids also decided they want to move in with their mother and her boyfriend. Well, Luke wants to move in with his mother and her boyfriend so Oliver wants to move into the same house as Luke. Luke wants to get away from Oliver and Luke also feels that his mother and her boyfriend won’t enforce any rules. Luke has clearly forgotten what it’s like to live with his mother. Also, his mother and her boyfriend moved in together as soon as they started dating 2-3 months ago. This whole situation is a real face-palm-er.
I’m still around. I’ve been sick, then slightly less sick, then sick again. The only thing that has changed is that I’m tired of talking about feeling awful all the time. Feeling awful is tiring. Sometimes talking about feeling awful is tiring as well.
The rheumatologist is retiring. Soon I’ll be without the pain medicine I need to function on a day to day basis. No other rheumatologists in my area prescribe pain medication. I’ve been diagnosed with Sjogren’s recently which helps explains why my eye lids stick together and my tongue breaks out in blisters.
TheJob is still working on their bizarre social media policies. While they can’t ask for anyone’s account, they’re kinda asking for everyone to follow, friend, or otherwise allow a corporate account to access their information. Ridiculous. Restructuring continues. Covering up information about the restructuring with the artful guise of “complete transparency” continues as well. It’s frustrating.
Luke has hard times; probably bipolar disorder. Oliver has been bursting into tears for no reason since his mother’s boyfriend moved in with her. After a long discussion with Jonathan, I’m taking a less active role in parenting. The children resent me. They resent me for parenting because I’m not their parent. I’m not anyone’s parent.
Less parenting means more time to devote to artistic pursuits. Perhaps I’ll make something of myself as an artist yet. Frida Kahlo managed to paint in a body cast. I’ll somehow manage to create art with a full body disease. I purchased a sketch book for planning photoshoots and have scheduled several friends to model for photographs. I’ve also been considering a series of self portraits – possibly portraits expressing how it feels to live with chronic illness. Strangely, when I tried to order a Prismacolor pencil set, I found out there was a shortage of colored pencils because adult coloring books have surged in popularity.
I’m still alive and kicking. Unfortunately, I had an awful RA flare that lasted for the past two weeks. Normally RA flares leave me practically bedridden, giving me plenty of time to blog – mostly about symptoms and pain. This time, I had too much that had to be done. Christmas preparations, work…stuff…, Oliver’s Harry Potter themed 11th birthday party…the list goes on.
Instead of resting, I pushed through the exhaustion, fever, and pain until I was in a miserable state and nearly hospitalized. Now I’m on a mega-dose of prednisone. I had cut back to 2 Ultram a day, and I’m up to 6-8 pills a day again. I had hoped the guaifenesin would allow me to stop taking Ultram daily, but no such luck. I’ll just be glad to be off prednisone.
If there was time, I’d write another story about Dee. Dee is an accidental nexus of drama so there is almost always a Dee story.