What do you think you’ll be doing 10 years from now on February 13, 2023? Today is your lucky day. You get three wishes, granted to you by The Daily Post. What are your three wishes and why?
Relax. I’m not going to bite or anything. Even thought my recent posts have been viewed by over 2,000 people, not a single person has contacted me. Perhaps they think I’ll infect them? Or make them uncomfortable with my expectations? That is something I seem to achieve with a reasonable degree of success.
But I’m not going to bite you. I’m going to educate you. What you do with the information will largely be unknown to me, but perhaps simply putting these concepts out into the universe will matter.
My first wish? It is actually for you. I wish all families and friends had access to support and good information. NAMI has some available. They have support groups in Pgh and everywhere. There are online tools and resources that can help you figure out what to say or how to be helpful and how to cope with the impact on your own life, be you immediate family or a friend wanting to help.
I will warn you that it is easy to find a NAMI person who says and does all the right things, then cling to them like a lifeline. That’s not healthy – they are likely engaging dozens of people, especially “new” people and can’t meet your emotional needs. Having a support group versus a support person is more sustainable.
Another real constraint is that NAMI is volunteer run so even the information page for Pennsylvania is reminiscent of a 1990’s photocopied sheet, minus the church secretary keeping things accurate.People use the phone, very few email addresses and almost no social media presence on a local level.
So my specific wish is that NAMI had the resources it needs to be available and accessible to you. And that the list for Pennsylvania wasn’t so heartbreaking empty.
My second wish? Medication. There are so many psych drugs out there and most are poorly understood, have unpleasant (or awful) side effects, and are sometimes just a shot in the dark. I swallow 12-15 pills a day depending on the time of year. Sometimes that changes because of the manufacturer or when my dosage changes – one med I take requires a very fine monitoring so I go up 100 mg, down 50 mg, etc. It can be difficult to track especially when – as I mentioned yesterday – psychiatrists don’t talk with therapists regularly to make sure everyone is on the same page. There are tons of apps but not everyone has a smart phone obviously and side effects can render apps useless. I can’t imagine what it is like for children where research is ever more scarce and the potential for damage very real.
Some examples of medication trauma:
- On two separate occasions, a controlled drug was missing over half the dosage which I didn’t discover until I was home. The pharmaceutical chain accused me of being an addict and didn’t even investigate even though I had NEVER had a problem before. I immediately switched pharmacies. I hope whomever took my meds sold them to people who needed them I suppose. You aren’t allowed to insist the pharmacy count your pills in front of you, mostly because they have a business to run and no actual HIPPA spaces.
- One time, the pharmacy told me that my primary medication was no longer in production even though it is an actual element, not a synthetic drug. They didn’t tell my doctor this when she called to address the matter. But when I went back to pick up the alternative, they “confessed” to me that it was a shipping error. Sorry.
- At one point, I had to take 21 pills at bedtime, BUT not eat food that close to bedtime. There was no one to help me figure out this dilemma. I ended up running upstairs at 8 PM precisely to put all those pills into a container of yogurt and eating them, then taking a few with one small cracker at bedtime. Sigh. Run out of yogurt at 7 pm? Ledcat has to go to the store regardless of what she’s doing.
- Right now, I have three doctors and a pharmacist giving me 4 separate opinions on a multivitamin. None of them will talk with one another. Over a friggin multivitamin.
- I think pharmacies should score or cut pills for you, period. To reduce error. Trying to cut pills when you have hand tremors as a side effect of the medication is ridiculous.
The research and production end won’t change because it is driven by profit, not a desire to alleviate suffering. The oversight and regulation process is a bureaucracy that I can’t even begin to address with a wish. So I would simply say this – don’t send pharmaceutical sales reps to offices. First, they take up seats that some of us truly need because we have side effects, from their meds. Second, they always talk on the phone or use a tablet or some other grand gesture. Third,they are loud and intrusive and take precious minutes away from my appt with the doctor. And we all put up with this because of the magic *samples* that help us cope with finances. To get free meds, we compromise our welfare.That’s not right. So I wish no more visits. Call, send letters and email, make appointments outside of office hours or simply help people access needed medication out of a moral duty rather than this song and dance we all endure. But take your fancy computer apps, your shiny leather carrying bags and your high priced salesperson clothing out the damn door and inflict it on someone a little less weary.
My final wish? That you would take one step – large or small – to alleviate the hurting and the loneliness of mental health stigma. Send an email. Make time. Look around your church, your school, your workplace and smile. But this is a two-part wish. Yes, that’s cheating. Get over it.
I wish you would do that again. And again. And again. Break down the stigma with intentional acts of kindness that are not anonymous at all. (to be honest, if someone left anonymous casserole on my doorstep, my illness would prevent me from eating it because I’m not above suspecting people of being pranksters.) But a smile isn’t anonymous at all. And it doesn’t cost anything. And you can give as many out as you like.
My point is that you can’t control pharmaceutical reps, but you can take control of how you engage mental health – are you informed (NAMI)? Are you compassionate? Are you willing to talk about it? If not, have you given honest thought to why?
As to what I’ll be doing in ten years?
Well, that’s a good question. I take a medication that can cause long-term kidney damage even though it is very effective so in ten years, I hope that I will NOT be experiencing kidney problems and that another medication will be as effective with fewer side effects. I’m okay taking so many pills if they work and I’m not going to end up needing a transplant – which mental illness usually renders impossible to achieve.
I hope I’ll still have health insurance. As more states embrace marriage equality, domestic partner benefits are disappearing. I hope Pittsburgh doesn’t force marriage on people to keep their health care. Two weeks ago, I wasn’t worried about it. Now I am. It would be terrible to get married to get health insurance, but straight people do it all of the time I suppose.
Hopefully, it will be a bit warmer but still seasonally appropriate weather and I’ll be productive, optimistic and kind. And have a new laptop.