Diary Sunday No Fun Day Aug 4
TD Debby came to town and locked us down
Divina is a bit of a night owl recently. She has her days and nights turned around.
For me, it’s okay, because I’m going to get up early and go to work, and she’s going to sleep a good part of my shift. Then I’m going to come home tired, and she’s going to want to go somewhere, most of the time.
This weekend, after doing the Doral round trip shuttle service. I was ready for a quiet break at home. Thank you, Debby=the tropical storm that didn’t want to hurry through.
All of us being inside for this long is a bit like cabin fever. The guys struggle with being still over a normal weekend. Divina is just as anxious to get out.
We had been trying to do some gig runs when she needed to ride. A ride is her most calm, the least painful body position.
We did twice at least. It pays for the gas for her ride, and it keeps our legs in some type of movement from time to time. We do not have the hang of it quite yet to be more than just a ride day.
The weather didn’t suit us going out, but I bet we could have made a lot of tips in the rain. I was more worried about the winds. My KIA is an older model and a bit higher profile, so the wind does affect it more. 🚗
Sleepyhead got up and ate her leftovers, while I folded clothes. Then she went straight back to bed. Towards evening, she’s fully dressed like she’s heading out the door, without even a goodbye. That ticks me off and worries me. She didn’t leave after opening the door to realize the weather. Instead, she ate, and paced the house.
She was much more considerate about letting me know where she’s going before. I’m not sure exactly how much of this behavior is her or the “guardians.” As I have not made their official acquaintance, nor know much about them yet. It’s hard to tell.
I’ve learned that she sometimes feels among a heavenly throng, but not all angelic beings. She is merely present in their noisy chorus of conversations. At times, something they say make her laugh out loud. She calls it a tick.
Every month, when it gets closer to shot time, those laugh ticks blurt out more than the rest of the month. The medicine does seem to be accumulating, as it each months’ injection causes a more connection time each month. The dosing down wave close to injection time is less drastic.
This is day 10 or so into the 28-day cycle. We go every 4 weeks. maybe that’s the advantage, instead of every 30 days.
Her LPRN assures me that this is not a drug that will cause withdrawal if she has to go without and injection before time. I’m not 100% in agreement, but maybe the withdrawal symptoms are psychosomatic.
I’m hoping with time to build in some history into Divina’s story, as she balances out some. She has been having more days with balance, but when the Loki starts telling her stuff directly, things can get impulsive. Thank goodness, she has such a good heart. I can see where someone who is into horror or the dark side of life gets caught up in this disease, it could cause somebody some real problems.
We need to find a way to help others get their medications. It would solve a good chunk of the homelessness problem, to just be able to get the medicine. I cannot imagine what she would have done without help. Someone else’s baby is out there suffering without knowing how to fix it.
The guys are off work tomorrow due to the storm. Divina and Eddi will be sharing the house while I go do the JOB. I’m going to ask this week if I can change my schedule some to go in quite a bit earlier, take a little longer lunch to be able to go home and eat with her. Then leave for the day about an hour earlier, so I can get back to her while she’s waking up again.
She will let me rest my eyes a few minutes, then we can go walk or ride. Which ever suits her energy for the day.
I’m hoping to go back throughout the week, just jot and publish some quick posts, with some secondary notes regarding her history. Just to have a better rounded picture of how much is going on with her.
All with the goal of helping others with a diagnosis. As this progresses, I’m sure I’ll find a support group for caretakers of patients with S. I want to become better acquainted with the organizations that are studying it, too. I cannot really plan too far ahead, because I don’t know when this lovely young women will blink on, and take off.
The next most important project, after getting her doctors, is finding out how to be her guardian, and getting her disability for her expenses. We have plenty to cover, day by day. We also have to realize we can only do what we can do within that time frame and circumstances.
Right now, Divina is laying in bed, listening to chamber music, and texting some stranger from Snapchat. She is safe and probably won’t leave the house while i’m asleep, She knows I’ll chase her down and call the cops.
I told her the last time it happened, I would fight for her. I’m not a fighting person, but I will FIGHT for her life. She needed to know I meant it! I love my girl, and will treat her sweet as can be, but if I get riled up, the dragon inside me will burn down the world. She will understand that I am not here to be friends. I am her MOM, & upside down, that means WOW! or Watch Out World!
The storm is finally lightening up a bit. I might get some sleep now!
Night Night🌃🌌🌚
Remember, above the storm, the sun is still shining!
Stay Positive | Be Blessed | Share Often
LaLa 👋
❤️🩹