The goons

& the hummm

It’s been a week for my Divina, 3 Doctors within 3 days, an up dose of a new medication, and the stark truth regarding following thru on another.

We did have a good Joyride Friday afternoon too, I’ll post that video apart at some point.

We are working from the pool today and they frown on phones, electronics and cameras. I see why, I wouldn’t want to be in anyone else’s Substack as part of the comic relief from funky swimming candids. But I indulged my hubby with this one shot, since he’s still in El Salvador awaiting his Consular visits and his 2nd kidney surgery. When it rains it pours in our house.

Blurry pool pic, because it’s not allowed

Back to Shade’s week. Her psychiatrist increased her dose of Lurasidone. We’re up to 40 mg now, and it does lift Shade’s mood, but it really hasn’t made a dent in the delusions of gods voices. It has not decreased her pain from the brutes beating her up either. It is a strange concept, I’m inclined to think she is having physical pain from something, but her brain may be attributing it to abuse from the voices to explain it to her consciously. There is no science to back up anything I say, only mother’s intuition.

If I had taken better notes regarding Shades’ food, mood, pain, I may have uncovered a clue in the patterns, but It’s hard enough to make sure she eats, sleeps and takes her medication, outside of not walking away from the house while I’m at work.

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Shade is a water baby, but sometimes the voices do not let her enjoy the outings I plan around water activities. It’s a shame. Friday was our only afternoon without appointments this last week, and I had told her I would take her to the pool if it wasn’t monsooning in Central Florida on Friday afternoon. It really turned out to be a beautiful day, but the voices wanted to ride instead of the pool relief. She really does get quite a bit of physical relief from the pool, as it’s salt water too, and it being just around the corner in town instead of over an hour to the west coast beaches. It’s almost 2 hours to her favorite beach in Vero, but It’s prohibitive to make the trip and try to work 6 days.

There is so much that she needs that simply isn’t getting met under these circumstances, yet I have to bless what has been provided that others had no help to achieve. She really is very fortunate to have someone to help her. Adults with this disease and no support are really in a very difficult path. They don’t have the mental clarity to endure the barrage of questions, forms, lines, unnecessary BS it takes to get help with first insurance or clinic to have the ability to accept their case. Then there is the prohibitive cost of some of the medications. One shot for Shade would be $2500 per month. Without doing the paperwork and getting earnings evidence, she wouldn’t have them provided to her by the pharmaceutical company. Imaging trying to trudge thru something like that with a terrible migraine or a head injury… it isn’t even close to what she is going thru. Only Shade truly knows what is going on in there. They won’t allow her to share.

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Next Dr was the counselor, and these visits are becoming very troublesome for Shade. If she knows in advance the day we are going, she is already suffering before we get there. I’m thinking this is linked more to some internal anxiety that triggers her getting beat up. The only benefits i think she is getting is from the counselor being so through with her records, and maybe someday shade will note how that Ms K is always kind and really the only people that cares to help outside of family. Ms K is definitely the person taking the most action to advocate for Shade.

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So herein lies the problem with starting a draft of the app. This account of Shade and our outings is now a couple weeks old. It got started a Sunday morning at the pool. Shade could not handle being out in the water of the pool without me, since I was up on the deck writing. She internally doesn’t not like my attention diverted to my projects. I would call it jealousy, but that seems harsh. So I just set my things aside and work on them when she is less aware that my attention is elsewhere. The app saved the draft on the iPad, but because it wasn’t finished, I didn’t publish the article. It sat there, waiting for me. It didn’t go away or clear or lose anything, but it doesn’t save for use online on the web or for use in my phone app. It’s a very frustrating perdicerment when I realize weeks later that my article is nowhere to be found to finish.

I put in a ticket to Substack support, which of course, went to AI. Now I’m not an AI brasher, someday it might come in useful for a cure for schizophrenia… we have to have hope at every turn. But the ticket just went thru the knowledge base and gave me forcefed answers. So I need to find a better way to write on Substack than using the App, or I’m going to keep losing articles for weeks while I look for where I laid my iPad. This is why it’s so important to start a draft online when I’m at work and write from the browser instead of the app. But I’ll have to build that habit instead of this one.

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I’m going to let you go, because 3 weekends interruption is too much for me to remember where or how i felt, or what Shade was doing so long ago. Day to day is hard enough.

I will note her new medication has lifted her mood, but it has not removed delusions. She still is convinced in messages from God and others… not gods. She also still has some odd behaviors like catatonia, and arm waving, not finishing sentences. But I’ve had much less of God speaking to me himself through Shade’s mouth lately, so I think we’re on the right track.

Oh and How did I know it was not God speaking to me, a being this belligerent and evil could never be a being worthy of worship. She herself called them the goons… but she didn’t say what was happening or how to help.

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I’ve been watching the Chosen the last few weeks, from the beginning of the series, 5 seasons worth. It has deepened my thoughtfulness and helped me return to a much more humble soul. It provoked quite a few internal questions too, but they are not conversations I will be having with anyone other than my brothers.

In the meantime, I did have a very close call with tremendous physical pain. It also had me pondering on resolutions for Shade’s care should anything happen to me. We still don’t have answers from the lawyers we hired last year for her cases. It feels very trepidatious for her should she lose me suddenly. I advised her that I was planning on having great health and living to at least 100, and it’s plausible for women in our family to do so. But if she should find herself suddenly removed from my care, that she should call the men in her life that were her guides growing up, namely her father, brother, & 3 uncles. I told her that her auntie would care for her, but I didn’t want to put that extra on her since she cared so long for our mom. It would be her last resort, or she would also risk losing her too, since she struggles with her health as well.

Folks, this is my grown baby girl, Shade. If you see her in Central Florida without her momma. Get her to her family, or get her to a hospital. She won’t know where to go, she won’t remember who to call. She will just walk on listening to the voices in her head. She’s not in any danger to herself other than confusion. She’s would only be alone if something unplanned happened to me. I’ve got to take more active steps to set up a future for this delightful baby girl. She deserves better. I have no idea what else to do besides what we’ve set in motion already. Waiting is the hardest for me. It’s probably what we need to do most.

Just a quick shout out

It was interesting to note how similar some of the side effects Shade has to what

Mat’s Blog on Schizoaffective Disorder

mentioned in his article this week. He’s been so great to document his progression with schizo spectrum. I’ll have to go back and add the link to him once it’s published, since I didn’t begin the draft outside of the app… 😉

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Stay Positive | Be Blessed | Share Often

Divina & LaLa 👋🫶