In December Divina had her last shot of Invega Sustena™️. That wasn’t the plan at the time. We went to the clinic in January before our vacation to North Carolina, but the BIG PHARM that processes the patient assistance program was behind and hadn’t gotten to Divina’s yearly renewal for her injection samples.

This medication is very expensive. I’m sure I’ve mentioned the flagrant upcharge for the medicine. Once you begin taking it, you really need to stay on it consistently for results and mental health.

So when you apply to a program and you are approved to receive free or discounted medication, you are at their mercy. If BIG PHARM cannot pay their office staff a living wage or to have enough staff to process the workload, you are left holding the pieces of your loved one.

Your loved one, they are in pain, sometimes extensive withdrawal, bodily fear, untold excruciating pain. It is not pleasant. It hurts your loved one and it is torture to witness as a caregiver.

So in January, Divina had the beginning of coming down from her shot. Small behavioral changes. Then big ones, the talking to oneself outloud and pacing went from stimming to mania.

That was when Divina was getting contact back from the research study forms she had been filling out on Facebook ads. Big pharm has money to draw in people to participate in studies in exchange for medication and money. There is a commitment in which they follow or keep track of the participants for months to years.

We did the bloodwork for the study in Boyton, only to be called back for more blood. It was an all day ordeal for the first time visit, driving 4 hours, 4 hours intake at the facility, lots of fasting blood vials and data points, questionnaires, interviews, & then 4 hours drive back to the house. I took the day off work to see if she was a fit for the study. We both lost more than a full 14 hour day of our lives.

They did want her to participate, but the driving every week and losing work time was a big drawback. So we withdrew from that study. Plus there was that 6 weeks of no medications that had to be waiting for it to be cleaned out of the body, before one could begin a new medicine for the research.

She had applied to several online without me knowing until after the fact. I had her update the phone number to mine. She could not even handle the phone conversation with the staff. Now all of her accounts and appointment numbers lead to my phone and even though her line still works, it almost never rings anymore.

Once we realized how much of her time, energy, bloodwork, & length of being followed for the medication, it was clear she could not handle it. She is so sensitive to the meds as it is. Cobenfy™️, the newly approved medicine just was not something her body would tolerate. Imagine if the unnamed medication in the study was something similar and she had to continue taking it for months even tho she was vomiting daily.

Since she had survived the 6 weeks of waiting plus a few more between the study appointments, it was clear that for the moment she wasn’t that much worse off being off the injection after the withdrawal wore off.

She has somehow resolved inside herself that this is home, and has stopped actively trying to run away, for the moment. She wouldn’t last a day without her big fluffy bed filled with plush bedding. If she walked off from the house at this point, she would turn around & come back the first time she was hungry or tired. I must believe that, or I would go crazy with worry while I’m at work. Being off medication had made no difference to this dynamic, as I feared it might. [lesson here: most fear is made up internal dialogue conversations with oneself about “what if” imaginary situations. I simply don’t have time for it anymore]

Invega™️ isn’t as habit forming as many others. Zyprexa™️ has a ton of warnings about tapering off and withdrawal symptoms. It has opioid warnings as well to not mix with opioid medication or antiopioid deterent medications. The cross indications are deadly if mixed with the wrong medicines. This the case with many antipsychotic medications, as I’m learning.

I try to learn as much as possible about the medicine she’s prescribed and how it might interact. The pamphlets for this stuff needs a college degree to understand the minutia.

As the months rolled past, no medication in sight, we landed on a day in therapy where Divina was having a very florid psychotic episode, but because she is not a harm to herself, nor to others, all I can do is bring her back to the house and watch her.

On that visit, as counselors do not prescribe medicine, I tried to make an appointment with her psychiatrist. Her Dr was double booked a month out for her regular patients like Divina. 2 appointments within each 15 minutes for 10 hours a day. Needless to say, there is a serious mental health crisis in this country. I don’t know how she is able to keep stability in her life with the excessive workload.

We did manage to see her psychiatrist this April. We needed to try a different medication as the voices have progressed to very abusive and bossy. It’s more than just a disruption. There are night’s she cannot sleep, and paces all night. Sleeping medication doesn’t touch her symptoms or even dull the mania.

Pacing and calling out to God for help. Or pacing and laughing with “The Committee” as she refers to the meetings of heavenly beings in her mind.

All I can do is work, and come home to watch her pace and talk to god. There is very little interaction with me, even if I initiate it. Sometimes she will just plainly ask me to stop talking. It’s just too much for her to answer questions. Even simple ones to elige her choice of something.

We never know what direction the voices are going to take. They may not even let her speak. We were in the drive thru one day because she asked me for food at the house, but upon arrival was not allowed to tell me what it was she wanted to eat. I had to just guess from memory what she may want for dinner. It’s one of my hardest struggles to decide on what she should eat for dinner.

Our visit to the psychiatrist led to that new dose, of some new drug a BIG pharm rep was peddling to the doctors. These people [I know they are just doing their job, but they have no ethics] I have experience from working for a pediatrician many years ago. The reps dress up in their fancy expensive business wardrobe, fashion designer briefcase, exotic sports car. They work really hard to bypass the checkpoints of doctors that patients have to adhere to [you know the people who pay the bills] Our doctor had a very strict protocol to allow the reps access. He had a moral compass as a physician & really tried not to play their game.

However sample medications from these pharmaceutical reps are necessary at times for those with no insurance, or are in a hard spot. Good doctors used samples the best way they can to treat people needs. I believe this to be the case with Divina’s psychiatrist as well. She has little control over when or how samples make it to the office or the pharmacy for her patients.

In Divina’s case, she prescribed samples of a newer more effective antipsychotic, that had less weight gain issues, but a few very serious side effects. An RX is still needed for samples in this healthcare system, as the house pharmacy still will disperse the medication.

To begin, it was a 7 day course of 5 mg of a dual medicine Lybalvi™️. It uses the active ingredient olanzapine and a counter ingredient, which I have forgotten the name of but is used to tread bipolar. Divina does not have a diagnosis of bipolar, nor schizoeffective, yet she is beginning to have mania at times where she races pacing through the house and cannot sleep during normal sleep cycles. There is no consistency to anything for her.

Now this medication has a taper warning. Once you begin using it, you cannot just stop taking it without painful withdrawal. Headaches, stomach pain, nausea is what the initial dose was causing, and to not take it after a week would be worse?

After the first course, we were to return to the pharmacy for the upgraded dose of 10 mg. All of these were to be samples, as Divina has no RX insurance. These doses of medicine we were told cost over $1000 for a 30 day supply. So free medicine is a blessing, I will be grateful that I didn’t not have the expense to purchase these for her. However; the reps had not made any rounds yet, therefore, there was no updosage of medication. And because it is a blended med of 2 distinct medications, you cannot just double the dose as only 1 of the medications doubles in the next size up.

It was decision time. I informally pray, to an unknown heavenly being, I used to have a name for him and a really close relationship, but this experiences has tainted my whole belief system. It constantly makes me question everything, and usually just give up to the moment, as I can only handle right now, this minute and nothing more. I did ask for just a minute, how to do this, how to keep my baby safe and healthy. I asked and let it go.

This article has progressed longer than I had anticipated. I could write pages of this experience right now, while I wait for Divina to relax. Unfortunately, I do need to rest myself as well.

I will tell you, many answers to that simple request has landed in our laps. I would call it blessing, but part of its source was definitely from all the hard work we put into it the last 2 1/2 years. It’s been a slow grinding trudge to get things done, but blessing is what is resulting from it.

We will share more next time…

_____

Stay Positive | Be Blessed | Share Often

Divina & LaLa 🙏🏻✨

You can help your loved ones, or others with the information in the chat. That’s where I share what I’ve been studying or perusing in regards to SMI & Caregiving for SMI.

Also, we use Benable for our recommended reading list. I’m working on adding Divina’s favorites to it to plump up the recommendations. She comes up with some surprising stuff once in a while.

Last but not least, we use Ko-Fi for donation goals to help with the expenses of setting up and maintaining the Guardianship. This is a lifelong relationship between Divina & me, the family court, the court’s capacity committee, & the attorney’s that represent both of us. Fun times for sure.

We thank you for following our journey.

We thank you for the encouragement you share when you comment and read.

It’s been very clear this Sunday morning that something very heavy and deep are going on with Divina and the voices. She’s hardly spoken. She won’t respond back to anything I say.

In between the laundry tasks, she comes to me and asks if we can go to the park to walk the trail. It takes a few minutes to get things caught up, but we do go off to the trail at the park.

The park is full, soccer mom’s, dad’s coaching, kids all over the fields. It seems like the perfect Sunday for some. Family being family.

We head over to the quiet end of the trail and shorten our walking route to not have lookieloos [if you know how to spell that, please share] people checking us out for holding hands, or Divina talking to herself. Tho this day she was pretty silent.

That’s a big clue to her inner world, as I’m learning. Someone is not letting her speak. They are being a bully, but I have no clues as to how, what, or why.

We finish our short path and I ask if she would like to double the short trail to make up for missing the other end. She does not.

While we were sauntering along, I tried to direct her attention outside of what was going on in her head. Pointing to the wildflowers barely blooming, the dew still on the grass, the gentle breeze as we pass under the shade of a tree. So refreshing and beautiful the morning air.

She did not care to notice or respond, and she’s pretty onboard usually with the whimsy of the natural world in the moment, if I point it out to her. Nothing was bring her joy nor relief.

When we got back to the car, after our shortened walk, I asked if she wanted a breakfast sandwich at the local drive thru. There was quite a line, but we had nowhere to be but together, in that car.

Her countenance was telling on her inner dialogue, it was not pretty, it was not happy, she may have been beginning to be terrified, not that I think back on it.

We get our food and head to the house. She ate in her room as the boys have been grocery shopping for their lunches for the week. It was a bit busy, but not chaotic. [I know I keep changing through all the tenses while writing, but the information is more important than the accuracy of the grammar today, sorry 🥺]

It’s kinda busy for quite awhile, longer than usual and I am actively up, moving things around to their places, which I usually do in the quiet time after everyone leaves the open area.

I sent the boys out again for laundry soap, Sunday is my only day to wash. So they were not happy about the extra trip, but they did comply quietly. Soap arrived, the boys finally head to their space. It’s quiet again in the main part of the trailer. So quiet, I hear Divina lock her door. Not good!

I gather up the clothes basket for the next round and stop by Divina’s door, asking for her sweaty clothes from our morning walk. She says she’s naked. I don’t care, I respond, I made you and know what you look like. Plus I’m not gonna look.

It takes a bit, but she finally opens up and hands out her dirty laundry. I come back to check on her & give her the supplements we’re starting, and herbal to detox. I remind her that the ingredients were mentioned in the Bible. [little importance to me, but it does motivate her when there is a link to scripture]

She lashes back, “I’m talking to GOD!”

I reminder her that god put her physical body in my care in this realm.

I don’t like that word, nor plane, or level, but I have not found a way to converse and note the difference between this place that our physical bodies are and that place were her mind is operating outside of the physical earth, as she feels. There is no easy way to have these conversations without breaking the trust that she needs from her support system. If I discount her inner world, then I am the enemy, if I agree with her inner world, I am not helping her heal and prolonging her psychotic break. I have to acknowledge her words, honor her belief as hers alone, and let her know it doesn’t matter to me what she believes, I will be here to care for her. But if she doesn’t trust me, we are all just screwed… pardon my English.

So, I make my point. I only have this body, in this world, and god doesn’t speak to me, so I only have the knowledge he let me gain on my own. I have my free will, which comes up often when I don’t obey the god of her mind. I remind her that I must continue to challenge the situation for the sake of her brain health. She replies, “Not really, mom!”

She is obviously fighting something inside, it shows on her face. My words are not bringing peace. There is no need to beat the sleeping dragon and wake the beast. But it may be too late.

She cannot contain her thought, she cannot hide what is happening, “MOM, I’m being raped inside, RIGHT NOW,”

This is real life folks, I’m not sure if my body jumped back, but my soul did. She was trying to push back the terror, and here I was quibbling about free will and connection. This shit hurts. It hurts her, it hurts everyone it touches. It’s killing me. My emotions are tearing down my body to not provoke anything else or show her my true feelings in her presence. She doen’t need it, she’s handling enough.

I don’t know how to respond. I just stand there aghast. Cannot even remember how we separated, if she walked off, If I fell back to let her.

I’ve been watching how she responds to touch, and physical connection recently and noted that she does not want me to hug or cuddle her as often. When these signs start showing up, I know now, something is coming on the inside. I don’t know the triggers, she cannot communicate or understand that something is triggering these “attacks”.

If you possibly have any insight into how to deal with this kind of weird fucked up trauma, I could use the help. I need to keep my head clear, my heart out of the way, and care first and foremost for her physical needs, and continue building her mental health. I’m sure we won’t make it until her May appointment with her psychiatrist,psychologist. I don’t even know what her designation is or means yet. Day to day is enough, and I feel for every caregiver trying to keep their loved one out of psychosis. There must be a way to get out of this hell more often.

I cannot understand why the mind would want to torture its body. It’s crazy… but that’s what they call it

Sharing old pictures today because we don’t feel like pictures when life attacks us this way.

Sending this out imperfect and as is.

Stay Positive | Be Blessed | Share Often

Divina & LaLa 🥺

I will tell you, last week, not having projects stare me in the face, gave me time to watch some videos and read some articles from others who have schizophrenia. I will keep adding resources to the chat, Benable, & the Pinterest for others to get the help they need for SMI too!

Join the chat

Revised from The Postcard Whisperer Farewell Note.  It disappeared when the newsletter was deleted.
It's been updated to reflect current events.  Thank you for your patience during this transition.
^_____^

Stay Positive | Be Blessed | Share Often
LaLa 👋

Last weekend the Postcard Whisperer was scheduled to attend her finale at the Floridiana Festival. We paid for a stall for the two days of the festival which will take place in Sarasota at the Fairgrounds this weekend. Feb 20-21. I was so looking forward to going…. but no

Preparing for this wonderful occasion has taught me, I am not a vendor. I have put off preparing for this festival for months. Now that we are down to the final days to pack up and head to Sarasota, I have yet to move a single postcard.

How we respond to tasks teaches us a lot. For instance, in Jan, I didn’t go to my local clubs postcard show. It was a 2 day event, and I didn’t ask for the time off from work.

If I hadn’t set up the time off for this festival over 6 months ago on a whim, It would have been another missed opportunity.

But my body is still grieving. My back went out this week, and refuses to mend. It’s likely that if I cannot get some relief by Friday, we will forfeit the deposit on the stalls and be a no show.😢

I want to go, I want to be a vendor there, but my anxiety has hijacked my body, & with my defenses down from Divina’s Schziphrenic outbursts, I’m surrendering the whole of the decision to…well, “The Lord”. Divina happens to be holding a vigil with the lord at the moment. So…

My postcard friends, schizophrenia is ALL CONSUMING. I’m going to put my daughter first.

Maybe when I retire in a couple years, I will have the capacity to dabble in postcard events once again. Even so, I’m going to keep MyPicturePostcards.com as my gallery of postcards, but It won’t have a newsletter. It will also not be a business, just an infrequent hobby blog.

Until that day, we are going to Sunset Postcard Whisperer. I’m letting the domain go, I’m removing the Substack, I’m turning off the shop lights, and closing the door. That also goes for Postcard Fest. If things change around in the future, we will see each other at a postcard show, “Lord willin”.

You may still find social under Postcard Whisperer or MypicturePostcards. I didn’t brand either, so who knows, some up and coming new postcardteer may overtake it, and I think for the hobbies’ sake, I would welcome that.

Postcards will always be here. You can find me next to a stack of California or Idaho or Florida. Yes, Mr Mike, that means my museum is history too. But I have a good buddy at the postcard club who will keep your collection preserved just as it should be.

I’m so grateful to you for your patience with me these last couple years while I tried to figure stuff out with my daughter’s health. It’s just too much for me to do both, so I’m going to care for her. She’s worth it.

Good bye Postcard Whisperer

So I took down all my other Substack Newsletters, and all the socials. I did backup the articles to repost after editing in another format. It lightened the load quite a bit, but I don’t know excactly what to do with myself creatively regarding the topic of schizophrenia. It wasn’t meant to be a creative outlet, it was meant to document what Divina goes thru. Surely there will be some more minor transitions as we figure this thing out.

Stay Positive | Be Blessed | Share Often
Divina & LaLa 👋

We were supposed to be enjoying a weekend away from it all. The room was booked. The tables at the festival paid for. The postcards stacked up next to the desk for transport.

Instead, today, Divina sat in the car while I was worked into the Doctors schedule for my back. It, my back, has been holding the weight of my pain and heartache, and it said no more. Our vacation weekend away, quickly turned into a staycation, in this dingy old trailer home that we share with my husbands sons. Divina, in her loving manner, quickly gave me the permission to let it go, to not feel sad, and to rest for recuperation.

She is the glue that holds me together. I realize often that I have never met another human on this planet that is quite as genuinely loving as her. I’ve met 100’s of thousands of people. While I am biased, it is also true. I dare you to meet someone quite a wonderful as she.

She carries the weight of the world on her mind, often mentally and emotionally sacrificing for what she thinks is humanities complete existence, that is what schizophrenia tells her, yet she makes no demands of another.

As a caregiver, schizophrenia took many things from both of us. She lost much of her memory, I retain it. She lost some of her give a damn, mine became confusing. She will never be the same, but I still search for little glimmers of the baby girl I know and raised.

Surely, many parents have this juncture of their babies suddenly being grown and independent, and almost unrecognizable.

Her independent adulthood was a marvel to me and a whirlwind, nothing I recognized as a child. Willfull, determined, focused. She is not the same person at all.

We’ve grieved the loss of old Shade. We are entering 3 years of the diagnosis and the 6th year of the first recognized break. Now it’s time to accept life as we know it now, and build a way to thrive. Part of this was me letting go of dreams to build a hobby hustle business on the side. There is no other side to life now except for Schizophrenia, Shade’s thriving despite schizophrenia.

It’s been the goal all along, but the ways of the world are that we hold onto old dreams easier than try to build new ones. The gods in Divina’s head are determined to push our limits and horizons. I have just had to learn to surrender to this path, but I’m stubborn. Shade is too, I wonder where she gets it. 🙃

Staycation mood, lay down as much as you want. Let the pile of correspondence be for a day or two more, all are important, none urgent. Work doesn’t need to know we just stayed home. The room was cancelled in time and should be refunded. All is calm for the moment.

Divina’s triggers are very much affected by my own anxiety and behaviors. She has had a lifetime of 30 years to observe my mood and how it belies my calm words.

We have a ritual, when we go to Peace River for treatment of any kind, we take the time afterward to ourselves for a meal out to eat. It’s our hangout time. I keep a very open generous mind for her pick of the restaurant and she has luxurious taste. It’s really hard to tell her no, because she is in so much turmoil every moment of her waking hours. Plus, she does reveal things to her care team that she does not say directly to me, such as, the voices also are speaking the whole time she is asleep as well. We have to keep the lines open, and treatment is a main lifeline.

I am NEVER going to stop being overwhelmed with schizophrenia. It is ALL CONSUMING, and if I’m going to have to pay my dues, I’m going to accept that everyday will be a new and different kind of wild.

Some of the realizations that my body has revealed

• First priority-Shade, her physical, mental, emotional needs, is a tax my body is willing to pay

• I am not physically well enough to create a hobby hustle business, my heart will have to accept it

• By allowing myself to let the old season go, it opens up greater good for Shade

• There are many more people out there like my daughter who have no one to advocate for them

• There are many things to investigate and experiment with that could be more useful to the SMI community, more important than postcards and murals

• I can still incorporate my hobby loves into the mix in different ways later on down the line, maybe a book, maybe a group therapy session sending postcards

A new season of finding a way to thrive with schizophrenia, will not erase the beautiful seasons that have already existed. It will just rearrange things.

Who doesn’t crave a reorganization party… maybe after my back heals some.

I have also had some very stark realizations

• I must work fulltime to support Shade and that leaves her vulnerable for a couple hours a day, guardianship is not paying for me to stay home with her

• It will be a couple of years before I can take my SS retirement, and if there is any left, it will not be much

• We will be constrained to those 2 limited incomes, we cannot count on anything else

• I will have to plan an estate with that in mind that will outlive me within those circumstances

I do believe the mind is powerful, Shade is proof. She believes she talks to gods. It stretches how I think of the universe, She pushes me to stretch more. I am not settling within the above constraints as a locked in box, but more as a foundation grounding point for our structure to build sturdy. If we fortify correctly from the beginning, surely we can build limitlessly.

That being said, we are saying goodbye to Postcard Whisperer, Gratitude in Bloom, Saunter Club, Mural Passport, Hacienda de Amor, Books with Nudists [for my brother’s hobby blog]. Indie Maker Mode domains will disappear, but Medium will archive the articles. LaLa Indie Maker will continue as a bio link to my project archives and anything new that pops up later from Navigating Schizophrenia.

Grateful4.club will still go on over on Medium with no exclusive domain, but there are so many great writers still submitting articles, and it feels selfish to take it down. We will have to see if I can find another editor before October Medium renewal. Please DM if you are interested.

All of the socials for all of the projects will come down, it will be a lot of work and hurt my heart, but it’s necessary to be completely emotionally loosed from those ties.

There is still the Indie Maker Mode work station that will need addressing. I will donate my extra postcards to the Sunshine Postcard Club. I will stop being a member of postcard clubs for the short-term, Hoping to visit again once I have retired from the JOB. My personal collection will be small.

This picture really bothers me, because it is so real. Our home is humble, it has been left behind in its care the last couple years. It must be dealt with. It is a big source of my stress and tension with Divina. We need to find our forever home and get set up there streamlined for schizophrenia and the pace it sets for us. That will mean less is more, more time for each other, more time to get outside, more time to advocate for others, and hopefully a few more vacations and planned staycations.

I do hope to be documenting more of small situational daily happenings in notes or the chat which I will archive in a section tab maybe, if Substack and time allow.

Writing fires my mind up, when I finally sit down to write, It dreams up all the things my body cannot later produce, so we will take it day by day.

Somethings I would like to do for this newsletter

• Highlight resources for others

• Have an active chat for questions

• Document more often Divina’s daily activities, mostly for my own memory

• Find ways to advocate that will not tax Divina nor my body, so we can have longevity to help others

• Continue sharing our joyride adventures, tho currently they have diminished

• Thrive before all else

I must go, Shade is hollering out to the “Dear Lord” outside. She might feel she is being spiritually attacked.

False alert, she was back inside pacing before I could get my aching body off the couch. Pinched nerve is slowing me down.

You can always help Divina on Ko-fi.com/mijadivina the funds go to her legal support for the guardianship that renews annually

You can also become a founding member of the newsletter, we hope to meet personally at SMI conferences for the first 100 founding members.

Official charities that we support are

1. LVIM [Lakeland Volunteers in Medicine]

2. Peace River Center -we donate to the thrift store our previously loved items that we can no longer use

Stay Positive | Be Blessed | Share Often

LaLa & Divina 🫶

We have been missing from active Substack duty, with just cause.

The PAP on Divina’s medication, [pharm provided directly from the brand as samples] has not renewed. Since they make, own, and provide the medication, we are at their mercy as to when or if it will arrive.

It hasn’t, there’s nothing we can do about it.

Divina’s insurance does not cover this antipsychotic medication, and its cost is $2500 per injection per month. If i had the money, I would just buy it outright, but I barely earn that amount for housing, food and expenses. We are not suffering, but I don’t have it for the medicine or we would be homeless. For the last 2 years, the PAP has provided it, in 2026 it hasn’t been approved to do so yet.

Prayers seem like a logical solution, except mi Divina has a direct line to God, Jehova, Love, I am causing to become, devil, and a really arrogant being calling himself “Greater than God” There are about a hundred more, but I cannot keep up with all of their names. I did meet Hercules or Ulysses once. I can never remember which one is which. If the direct line to that crew cannot pull a miracle with the Pharmaceutical company, then who can you really call on?

Between the waiting for meds, or phone calls giving us explanations, we did get an unusual phone call from a research study.

Apparently, mi lil nena filled out some forms, the source of which I’m not clear about. Honestly tho, the algorithims in her socials now know she has schizophrenia. Now stop to consider this just for a minute. How dangerous could it be for innocents to roam freely on IG or FB watching reels? Divina received countless offers for income by partaking in a research study.

Now, I did look the information over. It was legit, as far as I could tell. I’m not too innocent, but I’ve been scammed a couple times too. It’s close to home, sorta. It is testing new medications for serious mental illness, particularly schizophrenia.

If you haven’t noticed, there is a strong uptick in Serious Mental Illness in states that have legal or medically allowed cannabis. Those two little seemingly unrelated bits of information are crossing in a big way with young adults.

Have the conversation if you are seeing some weird behavior with your young loved ones, ie;

• staring at the moon in the daytime

• watching bugs move when they didn’t notice bugs before

• asking grandiose existential questions about the universe or spirituality

• Telling you magical animals like manatees swam up and kissed their feet off the edge of the dock

• TV’s talking to you through the fuzz-this is real, I wish I would have taken her to a doctor when this happened 2 years before the crisis unit

Shade was never a big pot smoker, but she used on occasion, and more so with the urging of her now disappeared husband. Maybe cannabis also causes invisibility? [I want to choke that kid so much, he better not ever show his face at my door. I have a place to stow away his body, kinda joking but not really.]

Also, there is some research to point to cannabis opening up the gene if it happens to be dormant in the family line. Shade never had a chance between Uncle Jimmy’s schizophrenia, and 3 head trauma events. The moment David gave her pot to try and get some sleep was the end of her life.

Brief disclaimer: For Shade’s sake, she loves her husband. Still. If he came to the door today, she would leave with him, and I’d probably never see her again. So I have to really watch what I say about him out in the open air. She hears everything and her subconscious is holding everything dear to use against her.

Words and actions matter. She has both sides of her brain working in tandem and it only appears that she is out of her mind when in fact she is very much inside her mind, deeply inside.

Watch your loved ones and act. If you have any questions call your local mental help line, or you can DM me and we’ll look for it together . This will be a hill I will die on, because I was paralyzed with fear, and did nothing for nearly 2 years. The clues did add up and the fear froze within me and I did nothing but worry. Worry does not help, action helps. DM if you need to talk. I’m no expert, just a mom.

Now, with no meds for 5 weeks, the call comes from the research study. And if they find us writing about it online we probably won’t qualify any longer, so we must be discreet. The long and short of it is, Divina may be able to participate in a new medication trial. Since they require a 6 weeks abstinence from the injection, she only had to wait a week.

We had to decide if we pursue the PAP and harass them to send meds that are not really helping, or if she tries something that is new, with the possible complications. I shouldn’t have, but I did let her choose. Somedays there are a glimmer of my bright beautiful baby girl in there. Everything I do is to cherish those moments of connection with the divine being called Shade.

It’s been a tough decision, and it brings some heavy responsibility with participation.

• It is 4 hours to the site

• She may have to be inpatient for awhile

• She goes back and forth on wanting to go

• Once she’s inside, she won’t be released until stabilized

• She is in florid psychosis currently, not having meds for 6 weeks

• We will miss the security of having each other to count on during the trial and it will be scary

• Each visit will be 4 hour drive there, 4 hour intake, 4 hour drive home

• It’s pretty far…if there’s an emergency [which I don’t anticipate, but who does]

• Again, I am paralyzed with fear, so I am averse to action.

Tomorrow is the first day, and it will be one of the longest days alive. But we will be alive together, and we will do our best together.

We’ve had so much happen the last few weeks, and no way to write it all down

But if you remind me we might get back to cover

• My last day of 59 and how it ended for Divina

• The buzz cut

• The interviews with the guardian committee

• The crypto scam and bank closure

• Our Carolina weekend roadtrip

• Tio & Sugar pop up- that one is easy. Here’s a foto. We had lunch with the family at the Cherry Pocket.

I’m gonna add that place to the Benable as a recommendation. We had so much fun, even with the COLD 🥶

Shade posed for me outside while we waited for the table. She doesn’t like to pose for pictures, so enjoy this rare gem. Note: she does not realize that her big cheese smile looks fake, and she cannot do otherwise anymore. She no longer has a natural smile unless the God’s make her laugh. It’s a very sad reality that Schizophrenia changes people, and much more than their minds.

At the Cherry Pocket.

The egg shells are the things we cannot talk about any longer and the music playing on the phone in the bedroom is the blessing that reminds me that Shade is still in there. It just takes big events to let it rise, then the bubbles pop, and we have to wait for the next one.

Stay Positive | Be Blessed | Share Often

Divina & LaLa 👋

We list Divina’s recommendations on Benable & you can also support at Ko-fi

I don’t even know where to begin with this week of events.

• Monday we went for shot day~there was no shot available, so dinner instead.

• Tuesday quiet at home because of the rain and thank goodness. Never thought I would be the one looking forward to drizzly weather, but now I get to rest when it rains.

• Wednesday, after work, before getting both feet in the door “Mom, we need to talk” Straight faced as hell. Then wait for news of the shot.

• Thursday, real shot day, bank day, lawyer day, ramen day & last minute joyride.

I am exhausted.

My head is spinning. I don’t even know if I am the right person for this task anymore. So many days are routine, then it all just goes south.

Alarm at 4 AM, I have no will to prepare for work. Then, get up do a bed check…. Do you have to check to see if your kids are still at home in the morning before you leave for work? This is a big red flag if you do. Something needs to be investigated. Mental health of one person does affect that of another.

During those quiet days, after work while I am resting, Divina is either pacing our short 48” trailer, or she is resting in bed. Her time is spent either between conversations internally with the Gods and such, or doom scrolling FB. Which leads the gods to want to trifle with little plans of deviousness, like 3 year olds.

Somehow the conversation of “I have schizophrenia & my husband left me” went to “I have a lot of debt” & Strangers responding “Oh, I can help you with that” She doesn’t even have the common sense to get up and ask me if what these “BOTpeople” are suggesting is plausible. She trusts everybody now.

Divina gave strangers too much information, including her bank account info. We are so fortunate that she didn’t have much money to be stolen from her. But now she owes the credit union and her accounts are on HOLD. They will be closed upon payment of the stolen funds.

If She would have been awarded her disability last week, or next week, she’d be completely out of luck. It would be gone. Everything she owns or possesses is gone, except a humble bedroom with a TV and some clothes.

These people, plague humankind, and prey on the sick, & unwell. If she wouldn’t have come home with me from the hospital, I’m terrified as what may have become of her. Schizophrenia is bad enough without the victimization that follows it.

Now Imagine your grown up child gives you this news, while you are spending every last dollar on providing for them. How do you keep yourself from not going apeshit angry?

All I could do was listen. Thanks to Dr Xavier Amador and his book I’m reading regarding the L E A P system of dealing with “Anosognosia,”1 I was able to put into practice this new way of helping Divina. But I dare you to try it under these circumstances. I’m so glad she didn’t lose thousands of dollars.

Now the hurdle of replacing the funds owed to the bank. And open a new account for her “guardian” to handle her funds. Once her guardian is appointed. It drags along, but it’s moving.

We did create a plan, we went for the shot. Thank goodness, she was agreeable to taking the injection. She has to provide consent until she has a guardian. Divina has already stopped her sleeping medication, her vitamins, her prebiotics, and her secondary antipsychotic Latuda. She has the prescription, and it’s filled, but she won’t swallow the tablets I set out for her.

She informed me last month that she wouldn’t be needing the shot any longer, because God was with her and he would tend to her healing. We did agree though, that the injection was the best way to continue treatment for now, until she could get her disability & medical insurance. We agreed that we would look at the situation further once we achieved those, but It was best to continue the shot & therapy to document her capacity, with the goals we set together.

It’s a very delicate conversation, and what I’ve learned is there doesn’t need to be a battle if no one is in eminent danger. So, I listen. I’m learning the reflective part, but it’s not natural…yet.

She does understand, she is not a child. Since she used to be a very articulate and bright, independent young woman, it’s just as difficult for her to deal with the loss of the previous version of herself, but many of those memories are blocked to her because of the disease. It’s rare moments when clarity strikes, and if she’s not going to follow thru on her RX, there is going to be less and less clarity as we proceed.

I hope I’m wrong, and a solution presents itself. I have faith and have surrendered this course to God, but I also trust the systems in place, and the human intelligence endowed to our race. The North Star moves for us on our path, just like the moon at night. Nothing is certain or steady as we perceive, even the rocks and mountains move. We’re just going to have to accept the flow, albeit slow.

There is this moment of heartening that happens occasionally, that keeps the tears & fears at bay. Shade will let out a rolling laugh to something the goons are tossing around in her head. To be in earshot of Gods and Spirits in a lighter mood, that’s something we have no control over. When she caught her breath she shared, [not a common occurrence].

“I was taking to little Shade, me, when I was a kid” she giggles

“Oh, how did that conversation go, mija” I asked.

“She says, ‘You have me eating beans’” little Shade brings to grown Shade’s attention.

“Well, We grew up loving everything!” Shade admonished.

That’s what happens when the subconscious tries to make sense of a little girl who hated beans but grows up to love red bean milk tea.

I guess you had to be there… but I’m glad you don’t have to be.

This was one of our Golden Hour Joyrides. We ended today with one quite similar, but we couldn’t stop to take a picture.

Our Benable is coming along little bits at a time with our recommendations. Included are lists of Divina’s preferences. When she mentions something, I just take note, and will pass it along there. Right now her first list is the Foodie Fun for her favorite spots to get a bite to eat.

Monday she asked for Saigon Bistro having Rare beef & meatball Pho. It’s one of those dishes she returns to enjoy often. It’s fairly health for her too, so I rarely decline her request.

Today, she craved noodles, so since we were on the other side of town, we tried a place new to us, My Ramen out towards Bartow. The flavor was the best yet. Serving size was huge too! I’m going to add it to the list after finishing this article, if no interruptions.

Stay Positive | Be Blessed | Share Often

Divina & LaLa 🫶

Many of the activities are becoming routine, which leads to a form of stability for mi Divina, Shade. However, due to the amount of time she spends alone while awake, it’s led to some disquieting behaviors.

There is something deep inside Shade that wants to be Independent to the point of being an Entrepreneur. I have no idea where she gets it from, 😏 as she witnessed someone she loves going from unhappy housewife to Indie Maker Mode. She also has a very warm loving spot for her family, while craving the attention of her mami. We simply, quietly, warmly, bravely, love each other to our core. But Shade is, or was, the Alpha female in our relationship, and it has been this way from birth. My existence in this world was to bare the most divine love in the world, and then cater to her every whim.

JB tried to teach me early on, at the dinner table, that Shade does not run the house. I was asking her what she wanted on her plate, sad when she wouldn’t eat what I made for the family, scurrying when she cried for something else. She and I were miserable trying to make Divina happy. The more I gave in, the more miserable she was.

Her daddy was fed up with a two year old dictating everything. He said in no uncertain terms, “You fix it, she eats it!” Yes, 28 years ago we were still carrying around the baggage of scarcity mindset at our tables, and trying to program it into our children.

There were parts of it that made sense. Toddlers want consistent firm, loving leadership. They were not made to head a household. Period. To acquiesce down to her level for every bite of food, bath-time, or storybook, was a disaster in the making. It was not peaceful or loving for anyone in the house, or the neighbors windows, to be honest.

Deferring to JB’s decision to not cater to a 2 year old, I simply made dinner and let him handle meal time after that. It worked, sometimes with a belt dangling around his neck for emphasis, without much actual use, but the threat still in the air.

I will clarify at this point, Shade was never physically abused. She is strong willed and we both loved her beyond our own lives, but an unhappy Shade really made for a miserable family. Once she understood we meant what we said, in our follow thru, her childhood became much more child like, and less diva miserable. And it didn’t take long, but we had to be consistent and firm for her to believe us. JB maintained that dynamic of parents direct and kids obey. It worked for peace.

Flash forward to around 11 or 12. Divorce looms on the horizon, and she is utterly oblivious to her parents parting. Shade is at the height of her childhood innocence, and naïveté. Her protection from our problems, really sideswiped her from noticing the imminent split of the magic little kingdom family.

After some time of figuring out who and what goes where, Shade was settled into life right back where she was safe and sound, her own lovely room, in the house she grew up in, with the dad and brother who were always present to protect. Mom was on the road, and visits with mom in the Semi truck were adventures in time and space, not mothering or home. The balance had shifted.

Divina earned her name as a divine being. No signs of schizophrenia at this point. She was a normal, as normal could be for a little brown girl who lived with her black daddy, white brother, and part time with her white truck driving momma.

Being insecure in my station with my daughter, I reverted back to what I knew from the beginning. “Your wish is my every command” mentality. It was tremendous pressure, to fulfill, but having those core family years allowed Divina to be grounded, having great memories to carry her thru the tough feelings of the current situation. I don’t think she knew the power she had, it wasn’t something she abused. We just wanted Shade to be happy, regardless of the circumstances, and that meant more of us saying yes, than no. There were no bad guys, only “yes” men, or “maybe”, which was donned the invisible “NO”.

As she was moved from her home, to high school at mom’s place, her displeasure seemed apparent. [I have since been corrected in this assumption, by Divina] My house mates were not good choices, for her nor I. She was more aware of that than I was, obviously. Her insight has always been, well for lack of a better word, divine.

She would bring her schools friends home for momma to care for. They were the wounded and thrown about ones that flocked to her. Shining with love, and humor, drew people to her, those who needed love and humor to survive. She was like a mother hen at a very young age, and her wings spread to protect all around her.

I’m sitting here wondering where the long list of kids that called us family are now, when Divina could use a kind conversation, or an outing in the park like all those years before.

It was Divina’s world for years, and then she left for Texas, without us.

Thankfully upon returning, Shade settled in with David and began the task of trying to convert her husband to a family culture. We see how much he lacked in the regard to family first, as she now struggles alone without her husband.

Every time I think of that boy, I want to strangle him with my bare hands. It’s best he stay away for a bit longer, because I have no forgiveness for him yet. I cannot even pray for forgiveness in my heart yet. If thoughts were weapons, he’d be skinned alive… Comanche movies have been my entertainment this week, and I had no idea of the cruelty preformed upon a human while extending their life to the endure the pain. There were very dark times in human history, and I’ve been reliving them on the tele, but I digress.

I don’t think I could ever hurt David. It would just make Divina suffer, so it’s best my thoughts flow out in print, instead of actions.

Deep in her psyche, Shade is strong and fiercely independent, but also humble, loving and respectful of the people she loves most, her parents. She is my divine love, and teaches me everyday how to love another, even in the face of such adversity.

The beginning of October was reaching a point of stability in our routine and Divina’s cumpleaños=birthday was approaching. It’s not our custom to celebrate birthdays, leftover remants from the years of Bible Thumping. She had taken up a bible study with JW org, and even with Latter Day Saints, and was settling into going to church from time to time, for a bit of peace. The voices dictate which services they want her to attend as far as I can tell. There is still no allowance from the goons to explain the plan going on in the celestial realms of Shade’s mind.

The days leading up to Shade’s last day of being 29 were agitated, a lot of pacing and very serious countenance as the goons “prophesied” to her. More than usual, attentive to her mood, we didn’t know where it was going to lead.

Our appointment schedule had eased off for October, less doctors, but our regular therapy and medicine appointments were maintained. We went to Ms K counseling in the new office with a window, yet deep inside the mental health center. Everything is locked as you approach offices for the safety of the providers. This is the Crisis Center, and when someone is ready to take themselves out of this plane, they end up here, either by choice or by force. It can be looked at from many angles, but from my vantage point it is life saving, and life is sacred. The work they preform here is sacred and loving, but it is thankless and ugly.

The new dosage increase of medication had been having results for Divina. She was having clarity, and could speak on this day. Her dr was cued into this and prompted Shade to do as much talking as possible for herself. It was obvious that Shade was present in her body, and she does love Ms K. Some of the other goons that speak through Shade do not seem to have reverence for anyone other than themselves. It’s always a very one sided conversation when Shade gives the floor to Jesus, or God, and there are so many of them that vie for the podium at the mouthpiece.

The session led to asking some point blank questions, about her safety, which led to more questions about safety. Why do you choose to not shave any longer? Would she harm herself? Have there been suggestions from the goons to harm anyone else?

Shade was able to answer all those questions, just 2 days before her birthday, exactly 2 years from when it was obvious Shade was very ill and needed help. She still is very ill and still needing help.

The conversation was open, honest and led to answers no one expected, least of all me. The goons want ol mom’s dead it seams, and have suggested it be handled by someone in Shade’s body. She fears she will not be able to control them, as she blacks-out with no memory.

Of course, for emphasis, a therapist has to ask…”Did you know about this? Have you taken any precautions? Are sharp objects locked away at your home?” All the while, I’m gasping for breath and trying not to let anything show, because Shade is observant, and her subconscious is recording everything happening around her, just like court, to be used against her, or now it seems, us!

This convo is not leading to anywhere good, from the prospects of a mother. A few more minutes to finish the session and the counselor to her credit does what she must with grace, tact, and duty. Shade did not come home, but stayed at the facility for the mandated term, decided upon the tending psychiatrist at the crisis center. Her brutal innocent honestly led her to over 2 days of intense observation and confinement, and she knew it was going to be like that when she answered those questions. She wanted to put herself away to save us.

There is so much to say about what happened, how each of us felt, how it will affect our future together. I need to get the notes down, because it probably could fill a book, though I don’t trust its usefulness to anyone else but us. I fear forgetting the minutiae.

Each family has to walk their journey together with this illness. None of these paths are going to match. Each little piece of the puzzle will be different and difficult. My best advice is to love, trust love, continue to love, yourself, your hurting family member, the system trying to help them without the support necessary. Love fiercely, love powerfully, love consistently, love in the true sense of the word, as love is an action verb. It moves, it causes ripples, it manages spirit and energy. Love is the most powerful tool in the arsenal against schizophrenia, and all SMI=serious mental illness.

The coffee smell is wafting through the house and I hear a little bug moving in her bed. It will be time to focus on mi Divina.

I hope you understand that she is first, before everything.

We will visit again soon!

Stay Positive | Be Blessed | Share Often

Divina & LaLa 🫶

More readings #AdLink

We’ve curated a list on Amazon of Books regarding Schizophrenia and Mental Illness. We make no recommendation regarding the contents from the authors, we merely have a bunch of books on the subject in one place should you care to read more. We hope to read as many of these as possible ourselves.

Please let us know how they impact your insight into SMI.

Shade is an intelligent young lady. She studied production automation in tech school with the hopes of becoming tech maintenance at the company she worked with. That intellect is buried deep within her. She still feels the need to search, research, investigate, and learn. It’s a living hell for her to lie around during the day listening to goons go from bullies to favorite friend… She and I are deeply grieved at the loss of this talent. It’s a weight that we must learn to free ourselves from, the love we had for the former self.

As she awakens in spurts, her curiosity has been drawing her to scroll on her phone. It’s not something I encouraged, nor discouraged. It just is. Those times she is waiting for me to return home from work, or when she is unable to sleep on schedule, invariably she is chatting with a stranger, or scrolling.

The last few weeks, because we’ve had more conversation than ever in the last two years, I became lax in following up with her doings, as she was in her room, she was safe at home, and she hadn’t been causing any trouble, her or the goons, depending on how you view things.

The goons are great at manipulating her, and I felt lucky that they hadn’t hatched any plans to cause Shade to walk off down the street alone. If she is home alone, and respectful, no need for me to continually check up on her… or is there?

One night this week, I went to say my good nights and I love yous. She was busy on her iPad in her room the whole evening, as I could hear through the wall the voice of someone other than her. It’s not unusual when she is in a chatty uptick between shots.

She really has not very many people who will respond to her from her previous life, including her brother, her father, her uncles and cousins. I don’t think there is any stigma with her illness, it’s more they simply don’t recognize her. She is very different, not joking or playful, very quiet mostly. They don’t know how to interact with new Shade. I don’t blame them, I can’t do anything about how they feel. My priority is Shade’s health and wellbeing, and that is enough work.

Back to her long conversation on the iPad and good night. When I popped my head into the room, she flinched back to hide her screen. She had never done that when chatting with anyone before. I let it go for the moment so we could wind down and get to sleep 😴, 4 am comes very early for me to get to work.

The next day after work, I asked some questions and let her tell me in her own time. The goons wouldn’t allow her to talk for a good while. This is now a fact of life. Shade would have told me, but sometimes she is caught by the voices and blocked.

I’m watching for triggers, but I haven’t been documenting things very well, so I forget a lot. I was hoping these conversations would be the documentation, but I can’t seem to get back to them as often as we need to write stuff down.

It’s been brought to my attention many times on Substack, that the platform is not for journaling, and that to succeed, you need to meet the needs of the reader. I’m sorry to break it to anyone, but Schizophrenia is ALL CONSUMING, so I’m going to have to write the way Shade and I need to ✌ Tho, we would like to help others, we just don’t know how yet.

Come to find out, Ms Divina, was purchasing courses, for the last month, and 1-1 coaching calls to make money 💵 How lovely and thoughtful of her… right?!?
Shade has no income, so anything she buys, I’ve been having to pay…and I’m struggling to keep her housed and fed and joyriding. Thankfully, the lord did provide a way to care for her psychiatric health.

I’m so grateful, and often wonder how others in her situation get to this point if they have no help. I also think, we should help another person get stabilized, but it takes so long with the medication, the dr visits. It’s a very long process. I don’t think Shade would tolerate the attention deficit at this moment.

Even Shade has not arrived at the point of awareness to her illness. She still things some of the goons are gods, and must submit to their word, and thinks I also must submit to her goon gods, sometimes. Those are interesting conversations that usually end up with one of us crying for sheer love of the other not getting it.

The course she was trying to study, and not able to concentrate on, was nearly $900. Plus 2 other mentor programs. It’s almost 2 weeks pay for me. I told her it was 2 weeks of time that I had to stay away from her, instead of be with her.

These are clearly her inner 4-year-old, still vying for mom attention. She is still hurting in the deepest part of herself without her knowing. And she’s bored. But she cannot concentrate to study. It’s not something her illness allows her to do in its current form. She also wants desperately to move out of this house, which is not going to happen anytime soon.

I’ve been trying to trust her with her credit cards, and just monitor her usage, but clearly it has escaped the boundaries of my attention. Part of me wants to be enraged, because old Shade would have known better. But She is not old Shade.

At this point, I don’t even know how to handle the credit card situation. I took them away, I had her install her apps on my iPad to monitor them, and set up alerts. We’re just going to have to go down to the bank and make some sort of arrangement with alerts and co accounts. I don’t know. She has to have something for her disability to be direct deposited into in her name.

These are things, I was hoping the guardianship would take care of, yet here we are 9 months later and nothing is resolved. I called to get updated, and we are told they will return the call or send an email. Nothing… I send an email and ask for an update and get a bill, but no update. I’m stuck… I have no ideas what to do at this point, as i’m financially committed to the attorneys and the cases they are working/or not working?

Well, If I continue this post, it will just turn into a rant. Things are crazy in our house. I don’t have any solutions, so we are just going to follow latest gem of truth=CWYCC

Stay Positive | Be Blessed | Share Often
LaLa 👋

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We had a rough week and I hope there's time to share it with you soon before I forget 💗 🙏

This was Ft Meade Florida. It's a cute little town and I would love to settle Shade here, but time will tell.

I've got to go to bed or she will not get to sleep either. So night night 💤 🌉

Stay Positive | Be Blessed | Share Often

LaLa 👋

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.

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.

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.

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.

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.

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.

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 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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Divina & LaLa 👋🫶

Today was a BIG achievement for mi nena Shade, my divine daughter. Shade was able to leave for the evening in the company of others, without her momma.

Divina has been reaching out to look for churches that her voices approve of. It’s a task solely provoked by her schizophrenia. She doesn’t share what the voices tell her, or the conversation. It’s as if she is honor bound to hold the heavens secrets. Occasionally she does allow a breadcrumb to slip out without realizing it though.

For the last couple months, between chatting with young men from dating apps, she has been looking for churches. She has a foundation of bible teachings from her childhood from going to the Kingdom Hall, and I must admit it has served her well in forming a kind, moral women of high values. She is a humble, loving soul, who cares for all and knows no enemies, internally nor externally. She cannot judge truly if someone is safe or dangerous. That is my role as mom, nurturer, guide, and protector.

I’ve been much more strict with her as our adult relationship progresses with the addition of SMI [serious mental illness]. She cannot tell reality from delusion. The changes to her medications have helped her become more cognitively connected to hold a brief conversation, but it has not removed delusional thinking, nor voices that promote the delusion.

With the addition of the latest pharmaceutical, she has been more “awake” but also more vulnerable. She believes that the voices are gods, & Jesus, though they treat her more like demons from my point of view. There is no reasoning with her. One cannot appeal to logic to convince her of what she experiences as true to herself.

Internally, there is some twisted love affair between Jesus & God, some tug o war for who will be Shade’s love. It also involves Mother Earth at times, but She has taken a back seat lately to the internal novela. I really have no idea where things are in the timeline as it goes back and forth from minute to minute. I don’t even want to keep track at this point.

All that we know is what we observe from the outside, and what she lets slip from time to time during therapy or a rebuttal to something I’ve said. She is in fact still that little girl inside whose mother left for 2 years to do god knows what without her. She never wanted to go to therapy to help heal our past. Now those feelings manifest in God interrupting therapy and causing great physical discomfort when we have our dedicated counseling at Peace River Center.

Shade as been provided some of the best free care in the county, by some grace of something. I am thankful for her care team and the blessing of all the help she receives between physical health and mental health.

It’s been a grand trial waiting for help from SSID disability. With the denial of benefits after 18 months of awaiting a decision, it has taken a toll. Financially I’ve gone from Zero debt to around $15k in the hole, not include the car I purchased for safe joyriding. Those expenses are in addition to the no cost pharmaceuticals provided by assistance programs from the manufacturer.

It’s no joke, schizophrenia… it is ALL CONSUMING. It takes all your energy, thought, feelings, relationships, empathy, money, time along with your loved ones mind and body. It is ALL CONSUMING. There is no alternative. You have to care for your love. You have to do everything within your power to ensure their health and comfort, because they are suffering every waking moment. You have to remain calm in their presence, & fall apart alone away from their knowledge. It is the most horrendous trial, we’ve ever faced. And you have to do it while continuing to live, love, care for family, work, survive. It is ALL CONSUMING.

I am not dramatizing the amount of effort it takes to wake up each day knowing, Shade will awake in pain & have to deal with such unloving conversations programmed directly into her conscious from her own mind. It is excruciating to be powerless to help, or even know how to help.

No one knows how to treat this disease except for medication that ruins the body to save the mind. And you have to bless it, you HAVE to bless that it brings a small part of your love back to you, in tiny, fractal increments of part of the person you knew before… at least in our case, I do get a few little glimmers of my wonderful daughter. A hug, an I love you momma, a “can we go for a ride, momma” little slivers of my baby girl in between the grandiose god saying “WELL,… I want YOU to…” I wouldn’t wish that conversation on anyone, and I get it regularly. Enough…

Today, the auspicious day, of mi Divina taking a breather alone away from home without her momma. A mental rest I hope for her and for me. And yet here I am, contemplating on her moment of fractional independence with the assistance of an old beloved acquaintance from her childhood church days. She matched up with someone we used to know from the Kingdom Hall 20 years ago. Life took us all in these little circles around the universe and back to each other ♾️ such a strange life we are blessed with.

Divina asked for a Bible study on our last visit on Sunday to Church, [we refer to them as meetings, but same concept] She was granted her wish finally, after a year of going to various places to find her worshiping space. She had a visit from a dear old friend who did indeed begin a bible conversation with her while I was at work.

I do approve of her having this activity. It helps her cognitively, since she really has no other outlets [that she chooses to use] for exercise of her brain outside of these random chats with strangers online. I don’t like those at all, but again, as long as she is alone at home while I am at work, having a cognitive output in conversation is good for her. It’s not without dangers tho… and that is my own fears projecting from my past experiences, mostly.

I think she understands that she cannot meet any of these people she chats with. I reminder her constantly when she brings it up. We are a package deal, She is in need of a caretaker. I am becoming her guardian, because she needs protection and help. When I try to push her a bit, she will tell me often that she is disabled, then of course, I let her be.

I am always working toward stretching her ability to think… to use her brain muscle, so her mind does not deteriorate as quickly. To allow as much functional ability for as long as possible. Think about how would you do that without overstepping a disabled persons capabilities or willingness. It’s a hairline tightrope dance. Schizophrenia is all consuming folks.

Shade is consumed by voices, and I am consumed with thoughts of how to help her deal with schizophrenia. I am broken… and I needed this evening to acknowledge as much. Shade needed this evening to not be my ward, but just a person. Tonight, even though present, we both got a breather from the BIG BAD Wolf of serious mental illness. I hope!

The hope is, it brings her a few moments of peace, as I see she had on Sunday. A couple of minutes without rocking, a memory of a song once sung, a hug from someone back in the day. Hopefully, these moments can help Shade put the gods in check for a bit and let her feel a bit of joy. I am so grateful to the church for following up this time, for sending someone to check on her, for remembering to invite her, for allowing her the safe space to go to church as a grown up without her momma. She needed this. I needed this.

I cannot wait to see if she has something to share when she returns tonight. I hope the voices let her tell me of her adventures.

Stay Positive | Be Blessed | Share Often

Divina & LaLa 👋

I don’t know when I began to write this article, but probably early June 2025, I’m going to leave it unedited and just augment from where it left off, jumping to now. Both parts are important views.

There is so much going on with Divina…

She has continued to tell her therapist that she doesn’t want her visits. Yet it’s the most productive advancement we’ve made all year. Mostly due to her being able to vocalize to the counselor what is happening, when she cannot share those things with me.

“I’m possessed” was the reason. Not ill, not schizophrenia, possession.

How to proceed? What do you do next? Who gets to make the difficult decisions regarding her care?

We are so fortunate to have or Ms K. She is a meek, kind, loving person, full of insight. It gets Shade out of the house and out of her mind, so even if she doesn’t want to be there, she still gets up and goes, and talks to Ms K while she’s there.

August 4th, 2025

I had to cut this article last month, and never returned to finish. Too much has happened since this day with the therapist. New meds, new opinions.

We went from being possessed to having conversations with GOD. A God who is not loving, but requires Shade’s mom to improve her loving kindness.

It seems like a different person when she speaks as God. Her voice changes, her countenance looks different. It’s not a joke. She is serious. Today was most taxing on both Shade and me. I must stop whatever it is when Shade speaks, give her/him complete attention.

If I’m writing, it means put down the iPad. If I’m cooking it means put down the spatula. So far I’ve been allowed to continue driving, but sometimes I have to change directions or go home.

God can be bossy. God can cry when his feelings are hurt. God is quite demanding, tho in a soft tone from Shade’s demur persona. 🙅‍♀️

It is the most frustrating, challenging conversations I’ve ever had to experience. And Shade was not an easy child. She was good, loving, obedient, but very active, We are quite opposite in many areas. She questioned so much as a teenager & young adult, but we’ve always listened to each other.

This is the most speaking God has allowed to pass thru the person Shade, my daughter. [There is no way to even describe how absurd that not only sounds but feels in actuality] It is definitely different than the mother daughter chats we’ve had on the couch, regarding every existential conversation topic.

To be clear, Shade had always had an open freedom to speak to me about anything she might want to talk about. She told me herself, [a bit later] that she tried LSD to heal her head injury 🤕 Then as schizophrenia began to present itself without our understanding of what was happening, she became more withdrawn, quiet, and sullen.

This is not the Shade with schizophrenia I have with me this week. She is talking my ear off. If this article sounds choppy, it’s because I’ve had to set it aside to give God my full attention, which is what I would do for Shade as well, but God requires it instead of just speaking to me like Shade.

I was reading about how he is trying a Keto diet, not so much for schizophrenia but for energy levels. I do see a big swing in Shades activity, mental activity, pain levels, and how the voices treat her, based on how well she is eating.

She recently had a round of antibiotics to ward off infection with a molar extraction. It’s pretty clear to me that gut brain microbiome is a real thing. I don’t think changing her diet will ever allow her to come off of medication, but I do see the difference in how clear her mind processes information, whether it’s god or her.

#AdLink we are using Cook Unity for cleaner eating. If you sign up with her code, both you and Shade will get a discount on healthy meals made by local chefs.

There is so much disapproval in God’s tone when he speaks to me. He gets very flustered when I ask questions, then requires me to ask them in prayer out-loud. something deep inside her is hurt that I don’t believe it is truly god talking and point out the obvious, that which is oblivious to mentally ill Shade.

I knew that Shade still has trauma from the divorce to her father. She has not mentioned that time since becoming ill. I will let her deal with her emotions at her own pace. But it is obviously bubbling up through God’s conversations with me.

Tonight, she requested to pray and confess my sins. It’s come up a couple times now. I don’t lead any conversations, but only respond. Without any guidance, I fumble with these experiences. My only hope is I don’t trigger her and she leaves before the guardianship is complete. There is very little I can do for her if she leaves my presence. It’s the most frightening thought of all.

Stay Positive | Be Blessed | Share Often

Divina & LaLa 👋

[My apologies on the video reflection. I’m still in cringe learning stage…] Look at how those cars just fly passed as we go the speed limit trying to enjoy the scenery.

We spent a lot of time away from home last week. Doctor appointments, therapy for both Shade and I. A lot of interference from the posee named Jesus who doesn’t behave like a Christian. It’s so befuddling to me how the mind works.

This week I worked all 6 days, and then we did the appointments after work.

But the weekend before we took Saturday and went off to the gardens in Delray. The Morikami Museum. We’ve been running ever since.

Today, we got outselves up and out of the house early. Went to the pool. [no cameras allowed, for obvious reasons]

For over an hour it was the grandest smile as my nena bounced around in the water like the kid she used to be. Just peaceful buoyancy. I would take her everyday if I could. She’s asked me several times for a home with a pool. All I could think about was the maintenance.

Today may have flipped the switch to on for the idea. She really just was peaceful. I have no doubt that the voices were still there, she laughed out loud a few times. But they played along today. I’m not sure how long that intertwining of calm will last if we had a way to provide a pool at home. She used to love the beach, and now the voices won’t let her enter the ocean.

I know I shouldn’t wait for the darkness to envelop, being in the moment is crucial. The moment was wonderful, even with the sunburn on my face, it was worth every expense, and sacrifice. She was just happy, visibly happy for once. The last time I remember her this way was our vacation last summer. She was on the trampoline with her cousin and brother. Those are the moments I must treasure and remind her of.

But no photo’s today to take the mind back there. We’ll try again to visit next Sunday, since we went to church Saturday, we had time today to play at the pool.

We should have more afternoons this week, not so many appointments. More will be determined by the torrential afternoons summer rains here in Central Florida. The timing can be tricky.

I’ll leave you with our joyride video from last weekend down Martin Grade Scenic Hwy. We took the long way down to the gardens last week just especially for the joyride. Shade never got the relief or the calm on this trip. She even told her therapist about how she couldn’t really enjoy it. But she did tell me of her appreciation for going the scenic route and would hope to visit it again someday. Surely, we will have plenty of time to take a trip down to South Florida and many more places to find some moments of joy and calm.

Right now, this week we’re going to stay close to home, and work on sorting stuff for postcard fest. Hope to enjoy the quite of the house together on the rainy days, when we cannot go to the pool.

Think I’m going to start uploading these to YouTube to archive them in one place. It might be easier to post them in the articles that way too. We will see!

Mija Divina Ko-Fi Page

Stay Positive | Be Blessed | Share Often

Divina & LaLa 👋

Stay Positive | Be Blessed | Share Often

Divina & LaLa 👋

#joyriding

__

#Navigating Schizophrenia

A day in the countryside on the Ridge

Learning how to document the joyriding therapy.

No therapist involved. We just take a nice long ride for Shade to relax. It allows her to sit up in a comfortable position like a recliner, but also get sunshine. It’s hard for Shade to concentrate long enough to go on a walk. I think she’s afraid of falling, but she hasn’t voiced this.

Joyriding is our way of touching grass. We just do it with our eyeballs and souls. We feel the curvature of the earth, the wave of sea breeze air, the volume of the clouds, and typically the setting of the day.

It’s not safe for me to drive much at night, so we try to enjoy the golden hours.

Today was special. We left early while the sun shone straight above us. It was our first time trying the new phone camera setup. Still not sure if it’s going to work, or even if we should bother with this part of the project. But it was Shade’s idea, and we are going to put for the best effort until she decides otherwise. She needs to take the opportunity to make decisions of any nature, but especially if it is regarding her mental health.

This was one of the most difficult weeks at our home. It has been consistently growing with pressure outside our control. So much is still unknown, so it’s just better we don’t talk out loud about it yet. But the effects have been felt on Shade’s illness.

She had strong delusions and the voices gained a lot of control over her with all the other external factors going on. Fortunately, her psychiatrist review was this week, along with her counseling. It was some very revealing and tattle taleing of what is going on in Shade’s mind. It was enough to make everyone stop ✋ and take a breath.

For a brief dialogue, Jesus spoke for Shade. He told us that Shade is going through something and he took the lead. He declared to both the Dr and Therapist that “Shade is really an alien” the intergalactic space princess kind. This is not my first time hearing this phrase, but it was their first encounter with someone other than Shade in her physical body. It’s very weird to say the least.

No other diagnosis, just more medicine.

I think they were of the impression that Shade was winning her battles with this disease. It is far from the case. She is stable, compared to where she started. She is not catatonic, she is not hysterical. There is an ability to mask her symptoms when we go do errands in public. Most would never know she is having issues.

Yet every time we cross a street, I grab her hand. Like I did when she was 4 or 5. I hold it close until she releases its grip, which can be lengthy. She knows she is ill. She cannot direct her life any longer. The girl who negotiated her own financing for her first vehicle, and the Amazon driver who navigated the countryside in Northeast Lake County, cannot even drive a car now. She doesn’t want to try to figure out her accounts. She spends the days resting in bed from the pain in her back or head, or she is pacing at rapid speed between the rooms to the kitchen and back to the other end of the trailer.

Her appointments came and went from the disability review. It was pretty obvious she is disabled. They don’t let anyone but the patient in with the physician, yet both the mental health doctor and the physical doctor called me in from the waiting room to communicate for Shade. Her verbal skills were blocked.

They denied her disability. They send a letter, saying she is not ill enough. She would have to develop other skills to find a way to go back into the workforce. Between schizophrenia, bulging herniated discs and yet undiagnosed autoimmune dysfunction, she would need to find a job.

I put the lawyer back onto the case to appeal. Between the doctors, medications, SSI and guardianship, all our savings is gone, all our credit cards are about to max out. All we have left is a tank of gas ⛽️ and a ride in the country to thrive.

She was prescribed a new medication in addition to the shot. Something new that I’ve never heard of. I still need to investigate it, but after 4 days, Shade has decided it’s helping enough to not balk at taking it.

Tonight she is singing in bed, and yesterday she posted on FB. There is hope. A small, shimmer, glimmer of beautiful light peeping through the storm clouds.

I am grateful for that after the week we had.

Stay Positive | Be Blessed | Share Often

Divina & Lala 👋

Now we were the ones taking our time out on the road

We got a late start tonight but it paid off for us with this sunset 🌇

A couple of things I'm trying to work into our routine more is get more connection with our extended family. We are about 30 of us with kids and grandkids. It's truly a blessing to see our parents progeny so abundant. We have a wonderful close family and we're going to take steps to include them in our North Star vision🌟

Shade is going to live a long good life around people who love and respect her. Right now she has a say in her future. We'll keep working to keep the catatonia away, to allow her choices for as long as possible. She's going to need her cousins as advocates as I age.

So we're adding family phone calls to part of our joyride time. It's the time Shade is most relaxed outside of her bedroom and she's comfortable enough to visit on the phone for a few minutes without much interference from the voices or pain.

She isn't always mentally present the whole time but she does catch herself more often because she genuinely cares for her family very deeply. She always was the cousin who connected all the others together. ✨️

Ok so the plan is get out joyride a bit earlier and connect with family and sunsets or pretty open spaces to share.

Enjoy your family!

Stay Positive | Be Blessed | Share Often

LaLa & Divina

PS: We named the car Stary Night =Noche Estrellada to fit in with the pleiades theme of Subaru and it's deep sapphire color 💙

Shade loves the moonroof

From the other room I hear her. She is in full bloom psychosis. Who ever or whatever speaks to her is making her laugh. She laughs out loud, trying to hold it back, but she cannot. 🥺 She hums. It’s an unnerving low sound, not quite laughter, not happiness, more like being tickled when you don’t want to be.

What do you do when someone is not present in your presence? I don’t know at all what she is dealing with. I have to guess. The possesse has total control at the moment. She cannot respond, only hum/laugh.

I ask, if they are tickling her and rub her back to see if she can relax. It does not help as it once did. Sometimes, when Shade is disconnected, the gentle touch can bring her back to me. It is not always the tool to help her break free in the moment. Sometimes it’s ignored, like this time. It’s not a personal thing, but it’s hard to not take it personally.

These are the moments, when I have to remove my own feelings and overlook what is happening to me and focus on her. It can be humiliating for someone on the outside of the conversation to just be the observer. It can feel like the time you went to work and the clic in the corner repeat your name out loud. Maybe I need to get my paranoia a check up.

Then i think, thank god, she is not paranoid, and just has voices. It’s a few more days until her next shot. She’s been on a roller coaster this week. Busy then ignored, then busy then ignored again, being the complete center of attention, then fading into the background. It’s not easy for Shade. It’s not easy for me.

Then I think, Thank goodness the air conditioning and the fridge still hum along. It could be worse, and I don’t want to know how that sounds.

My new therapist appointment is next week. 4th time’s a charm…

Things that seem normal to you and I are no longer normal to Shade. Knowing which person I’m going to get from day to day is the most challenging.

We woke up groggy, we, meaning my lovely daughter. It was noted in therapy by our host, and we worked through it casually. What was not noted was the ponytail of curls, that will soon begin to curl around themselves. They will become the top of an uncomfortable conversation when I ask if she needs help to take care of it.

Yesterday, she felt like conversing, asking if she could get a buzz cut. She’s tired of the maintenance. It seems like it should be normal, to get up, shower, wash your hair, brush your teeth, and put your clothes in the wash. That was how our family was raised, including Shade. These all need supervision from time to time, now. A gentle reminder, or a soft question before going to an appointment.

The therapist may or may not have noticed. But I do. I see the difference in a lovely girl who used to dress up for her husband, just because. This was one of David’s complaints when he called us together to commit her. She couldn’t keep her hair caught up, clean and washed. It’s very curly and difficult when she’s well. Now it is crossing my mind if we should go ahead and cut it some.

I acknowledged her request, but ignored it. Tomorrow will be another day to broach the subject with different light. Not gonna lie, it’s going to hurt if I spent $400 to get her a keratin treatment to help her manage it, then she decides to chop it off.

Twice now, Shade has said that she doesn’t want to go to therapy. The voices have much input into this objection to going, more than I’m comfortable with. I don’t force Shade to do anything. I do have some non negotiables that she is struggling with, mostly due to interference with the voices being bullies. She continues to reach out to young men with online chat. I don’t get involved until she brings up the conversation. I don’t ask, nor do I stop her, because it does help her to talk to people and use her mind outside herself.

Shade finds someone to talk to, then when she tells me about them, I start the countdown, no meeting anyone until after 30 days of conversations. We’ve not reached that level yet. The young man must be moral, she is pretty good about the dealbreakers mostly, no d pictures, no drugs, or crime, nobody gets ANY money…. Yes, we’ve had that happen. She no longer can determine when people are trying to scam her. She used to be so cautious and vigilant. Not only that, but she even named her dog Vigilance, due to this nature of watching out.

Right now she is visiting with a young person living about 4 hours away. That’s a good distance, until they start talking about meeting up. My husband is firmly against any meet up. David was a dick to leave his wife, and Eddi, nor I will forgive him… not me, not yet.

I do remind her that a marriage is both a moral contract and a legal contract. She just looks at me sideways when she understands. Some days, she does not, and I must remind her. We are going to follow the lawyer’s recommendations, it’s not time for a divorce. It is time for guardianship. We can sort that other stuff out later. In the meantime, it’s just chatting, and nothing else. But these men out there are persistent. It’s so sad to see so many lonely young people.

The good part is the rapport she has with her therapist. This lady is heaven sent. So patient, gentle, genuinely interested. They get along so well.

I’ll change the wording from “We’re going to therapy” to “We’re going to visit with Ms K” Once we are in the office, Ms K does just fine getting Shade to converse. It’s so amazing to see.

Therapy for Shade has been the place I get the most information. Shade can relate, even though it’s difficult for her, she still relates so many things that she cannot manage to share with me. In the office, she freely just answers Ms K, and it’s like i’m not even there. It’s been a big blessing that they allow me to go with her, otherwise, she would not go at all.

This week, Shade finally explained why she doesn’t enjoy outdoor activities like before. She says that her body feels tight, or compressed, like it’s cramped up into a box. She had some sensory stuff going on the other day too and stayed in bed under the covers. When I went to hug her, she said she could feel the surrounding aliens. Like when a person stands too close and you can feel their presence. It must be very unnerving. Mi pobrecita.

It’s been a nice week for our personal relationship, because I’ve seen so much of my daughter again, instead of these ruffians who keep her mind tied up. Shade has come out of her shell quite a bit this week and even sang while taking a joyride.

We’ve made some changes to her routine:

• No trazadone to sleep

• Caffeine free if possible

• More activity outside the house

• More car rides [until today, tires are going flat 🛞]

• More individual attention away from the boys.

Now if we could get some shower action and get those knots out of her hair.

Eating clean and balanced has been a HUGE improvement. Just balanced planned meals of her choice and less sugar. She loves the Cook Unity meal delivery. I’ll leave a link below. It supports local chefs, provides clean prepared food, and she gets to choose what she eats with only having to warm it in the microwave.

Cook Unity is the meal service Shade requested. #AdLink

PS: The documents have been prepared and sent off to the court for the guardianship. It won't be long before this uncertain part of our journey ends.

Stay Positive | Be Blessed | Share Often

LaLa 👋

This issue:

• Guardianship

• Dr time

• Shade time

• Me time

• North Star recalibration

Another quarter is leaving and spring has arrived with a vengeance to over rule everything lovely from the past and to plough straight through without caution to what its upheaval wills.

Guardianship Update

The files are completed, the classes are taken, the signatures affirmed and sent on their way to the courts. What started as a safety net to protect Shade, is now the self inflicted torture device of my sleepless nights. By becoming my daughter’s guardian, I have given all control to the courts to decide if I am in fact worthy of guarding and caring for her. Should I fail, she will be a ward of the state of Florida [if they deem so] and have ultimate say in all her care.

I wouldn’t feel like this was a David and Goliath tale if I hadn’t grown up in a cult. Ordinarily, this relationship would be seen for what any other case with a Florida agency feels like. I do think the intent of the State is to preserve the best interest of the child|ward. It is my own lack of faith in governmental good will that clouds my feelings.

Shade was born on “assistance” Her father did not claim her as a child until after she was born. He still struggles with this. Not the paternity, he knows it’s his only offspring and cherishes her, but the responsibility of fatherhood financially has never been his strength. We see so much living backwards, and I’m not sure it helps us much to figure it out. I’d prefer to see his love and sacrifice for her instead of what he could not accomplish and my co dependence to allow it.

Being born on assistance means, Welfare paid the bills 💵 for her birth, her physical care when she was little, her healthcare. We were in the system almost 3 years since the day I found her little life within me.

So somewhere along the way, Florida, I, and Shades’s father exchanged roles. Florida trusted us enough, meaning, they didn’t go looking for him after we got off assistance, and allowed us to provide the best we could with our new parenting skills.

So Here is where my trust of Florida=[insert any government agency] comes into play. Casework in Florida gets lost, and I don’t need Shade to get lost between bureaucracy. I need the State to have her back. And to some extent, I think it will. There is really no other option at this point to prepare for her future, should I pass untimely.

Doctor Update

Most of Shades care has stabilized regarding her visits to physicians, therapists, therapies, etc. Her insurance [a local county indigent program] became due and we took the steps early to renew. We still wait for the cards to pursue some services. That’s kind of a normal thing, but shouldn’t be? Everyone understands this delay.

The appointments on hold are the dental, and physical therapy. I forced her to give up the injections in her back for her spine. They interfere too much with her mind and exacerbate the psychosis. I’m not sure that physican’s clinic isn’t an injection mill. I have the inclination to report him to the insurance, but that may cause suffering to someone who really does need those services. It was just too easy to get poked in the back with very strong drugs every month for free. And the office was so busy with patients that the syringes were lined up on the counter for a whole days worth of injections. It was unbelievable how many he was going to do that day.

That Dr was replaced with physical therapy. I really thought that would be so beneficial for Shade, yet she abhors going. She begs me not to take her. What if Florida decides to force their hand and make her go when she does not wish too??? Shade is a full grown 29 year old woman. She is not accustomed to doing things she does not want to do. I’ve always been able to logically explain how an outcome change by us making one decision or another. Now she has not the logic to always comply.

It is day’s like this when I wonder about the families of others. There are many accounts of people diagnosed with schizophrenia here on Substack, to read how they are supported by loved ones. How do their loved ones survive, decide, continue? How do we get to the point of thriving, though the loves of our life are ravaged by such a demonic illness? Oh no, here come the tears…

Shade Time

Shade spends each and every day pacing. Back and forth, up and down the hall way, down the front of the trailer outside, turn around and back. She is locked inside her head while pacing. She is taking instructions from the heavenly throng. She doesn’t have clearance to speak, only listen. She breaks out from time to time in maniacal laughter from something humorous, but not funny. If caught laughing to herself, she no longer has embarrassment here at the house. She is free enough to pace and laugh and grimace 😬 at will now. Those of us who live with her have no idea if we should step in and speak, or let it go? What do we do? Not a clue.

As long as she is not in danger, or hurting herself or another, we leave her be while she walks around in circles or lines.

She also has the other past time of rocking in her chair outside. I bought her a new chair after the other one broke and sent her to the Emergency room for head trauma. This is a much more sturdy chair. Eddi reinforced the other outdoor chairs so I would not share the same fate. It might work, and I’m glad for his care.

Me Time

Meant to be a joke, because there is no such thing now. Me time was the time I used to ✍️ write, oganize postcards, or build my mini empire of niche websites. Most of those things are sitting on the sidelines jealously calling me.

Schizophrenia is all consuming, ALL CONSUMING. Right now it is. Between work, and Shade, my body banished me to bed during any other time not functioning for either JOB or Shade. I’m sick again. I started to feel better and saw the Dr for me today. But I’m starting another course of medications too.

Me time has turned into looking for a therapist for myself, sitting in the car alone on the phone to see if she is a good fit. Hoping Shade does not hear any my conversation for fear of guilt or worse yet her subconscious listening and using it against her internally…. NOW there is a wild thought, I never in a million years considered. It sounds crazy, and yet that is where my own mind went.

Damn those luscious Dove chocolates that make you think Me Time is possible with a covered caramel. It is not. And venting about it in an articles is not the solution. Because it causes Shade to be envious of the time not looking or waiting on her.

I think at this point “me time” is taking note of these thoughts and feelings for me to bring up in my next 2 hours a month conversation. I don’t know if it will all fit, so if you have any answers for me… please pass them along and share them in the chat for everyone. No one should have to face this illness alone.

North Star 🌟

I’ve been trying to keep something on the horizon to reach for. I don’t know what it should be anymore. Should I just be content to live out my life in this broken down body, in this broken down trailer, in the seedy part of town, going back and forth to a stressful job to come home and check on my long gone mentally ill daughter.

Should I try to buy a house that Shade talked about wanting 2 months ago. Should I leave and go West because her gods suggest it?

My compass 🧭 is lost. The only thing I know for certain is to wake up and make sure Shade is okay.

Thank you for reading 🙏🏻