🫥A really tough week
Medicine decisions💉💊🧎🏼♀️
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…
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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.
Finding an effective drug that you can afford is obviously very complicated. Wishing you the best in your search. Thanks for sharing.