Diary Thursday Jan 9, 2025
Surviving the night
Wednesday we did our monthly appointments with the local psychiatric services department. They are the ones who cared enough to try to treat Shade between the Hospital and Home. It’s been a year now, with this diagnosis. Schizophrenia was digested in the understanding of my daughter, but not accepted really as an accurate label for what she feels is happening to her.
Fortunately for me, she has not resisted any treatment plans, regardless of her disinterest or disbelief. She has such a great heart. It’s the scary kind of heart, that loves all, and gives all, and spends all. It’s that last part I’m concerned with. Too many people repeat that cliche in movies, songs, and books. It perpetuates a terror in me every time I hear it, mostly because I’ve already lost good ones very young. It would be my wish that she could taint that good just a little, and secure her place here with me on earth for a long time.
Yesterday was a big day. She spoke up for herself with her LPRN. She told her the Caplyta isn’t helping. The voices have not diminished and continue to torture her. I concurred with her, that while her brief bright emotive day was beautiful in this moment, it had been a very dark month. She had many dark days, back to back, psychosis filled days within the last 28 doses. So I backed her up when she asked to have it taken away.
Her care provider did not hesitate to remove it, while even we sat with the next two weeks of samples from the pharmacy, packaged and ready to go right in our laps. It was out, “Lets try”… as she rattled out a new RX name and looked up the dosage.
I asked if it was a dopamine receptor targeting medication, similar to the Invega Shot. It was.
I asked if she had gotten wind of a recently approved drug that used a different receptor for activation. Something without the weight gain and other well known side effects of dopamine pointed drugs. She had.
Typically, I’ve not had any positive reactions in the past when bringing up medical research information with healthcare providers. They really like to hold that position of … … IDK 🤷♀️ since I’ve not studied to practice medicine. It can be challenging to get them to listen to a layman’s perspective regarding pharmaceutical findings.
She was hesitant for a second. Then she pulled out the RX reps documentation, as they had freshly canvassed the care team staff. She called the pharmacy herself to determine if there were samples available. It was as easy as that and the new pills were like they were hot off the press and personalized for Shade. It was too easy, and by the time we left, doc was almost giddy for prescribing her first script for the start of the art concoction.
We looked at each other in amazement with the ease of switching up between the meds, and headed back over to the pharmacy to pick up the new and leave the old behind.
Arrival at the window was easy peasy. A year of monthly visits and PaP applications had put us on friendly terms. [always….ALWAYS, treat people caring for you nicely. Always] They seemed surprised when that mystery phone call was referring to us. She would get it ready and txt when it’s time to pick it up.
We went on with our business
Neurologist follow up [has to be another article because it’s already 1 am with this one]
Lunch of course
Fingerprints-part of the guardianship application duty
A cruise around a subdivision to see what the new houses look like
Random stop at the house for supplies
Copies of the neurologist to the primary care to make appointments
Back to the pharmacy
The packet was ready and we couldn’t leave the other two weeks of samples there because once out the RX window there is no going back…idk🤷♀️ safety. The day had been so full that we unrolled ourselves and our stuff out of the car upon arrival to the house. It was time to chill
We went straight to house dresses, my momma called them a muumuu, house dress works for us. Not really a night gown, more like sweats, a dress for around the house.
Neither one of us had any more brainpower to start reading the package of samples for the details of starting them in the morning. That was our mistake.
It was said, she’d need to take them with food, so we got up this morning ready to start our day and down some pills. It turned out to be the opposite as we discovered by reading. Such an underutilized skill! Now we had to wait 2 hours before she could take the first dose.
It came with a book to track symptoms for the 2 weeks and a very particular order, though not difficult. She made sure to claim her good day this morning without any Caplyta… no offense to the medicine, it works for who it works for. We wrote it down in the symptom book to start, “She FEELS good” and she did wake up happy and bright and full of love this morning, after two whole days without it.
She had to wait the 2 hours, so we filled it with folding laundry and combing out her long curly hair in the shower. That pretty much filled the time. She was feeling so much better, and those little demons were far, far away.
Then we gave her the dose at noon. She complied reluctantly, but dutifully. She is such a love.💕 And there it is.
I’ll be up all night, watching her breathe, waiting for her twitches, feeling the life in her cheeks. I’ve checked on her so many times and it’s so cold here tonight. She’s like a log, not turning about, not snoring like a log. Yet every time I go lay down in the other room, she has a moan, as if to fight off those demons in her sleep. I wish they would let us be. I cannot wait till morning.
Side note….
This new medication does not have a regular PaP to help with the cost of the medicine. We now have to apply for Medicade. She has to provide a denial from the Medicade office to the maker. If she gets approved great, but if she is 🙅♀️ denied, it’s a waiting game. It’s a political power play from the pharmaceutical company to get the medicine on the approved list more quickly… at the expense of the patients livelihood.
There is no way that GOD has possessed or communicates with Shade. A god of love would never, ever torture people for the easy access of a new drug.
Yet, I prayed my eyes out before I came out to sit on the couch to get this sh..💩 off my chest.
I did find kind of a support group… a FB support group from an organization I came across online. I’ll drop those in the chat in the daylight. I’ve got to get some sleep for the JOB tomorrow. I hope i can concentrate while she’s home by herself to gives herself the next dose of devilry. [not the medicine, but the internal struggle she will have because she took it]
Real live people have to deal with Schizophrenia and Psychosis on a daily basis for the whole of their adult lives. Find a charity or organization to rid this planet of this disease. Pray for peace within, and work towards its solutions! 💕
Stay Positive | Be Blessed | Share Often
Divina & LaLa 👋
Thank you for your response. I know that the advent of psychotropic drugs has been a mixed blessing and curse, but I suppose I like to imagine what might have been possible if they'd controlled my mother's symptoms. As it was, during occasional visits, I was never sure she knew who I was. She wasn't diagnosed until she'd been married and had three children, a decade and several states removed from her parents. It was also the era of the schizophrenogenic mother model, and I think my father deliberately kept us at a distance. We had little, if any, relationship with them. In any case, her younger sister also developed schizophrenia, and they had her lobotomized (partially) and cared for her and her children afterwards. I published a memoir about trying to invent a mother from the scant evidence I have. At speaking engagements, I was blown away by the stories I heard from others about family members who suffered. We just don't talk easily about mental illness. That's why it's so important to hear your stories. Thank you for being willing to share.
Thank you so much for sharing your experiences with your daughter. My mother was diagnosed with schizophrenia when I was an infant (1953) and institutionalized until her death when I was 13, as was common in the day. I've spent most of my life trying to understand the person and mother she would have been if she'd been able. I wonder what kind of mother she could have been if effective treatments (better than EST and insulin shock therapy) had been available. I'd like to think we could have had a real relationship in that case. Your story is important. Thank you for sharing it.