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 👋

Stay Positive | Be Blessed | Share Often

Divina & LaLa 👋

#joyriding

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#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