Still Wounded

I wrote a post about 5 days ago, but didn’t post it because I had to drive Fox somewhere.

I just want to give a quick update before I share the post: it turns out I was transferred to Fox’s prescriber at the same clinic where I’ve been going, so I was able to make an appointment with her (just in time to refill my meds). The “epic quest” was not so epic after all – thank God. (I’m still having trouble believing it.)

This turn of events was extra good because I was able to use my doctor’s appointment to address some problems that have been bothering me for a while. I apparently have arthritis in my knees; he sent me to get x-rays, which may result in physical therapy that will (hopefully) alleviate some of the pain so I can be active, healthy, and happy(er than I am when I’m sedentary). I’m also (hopefully) going to have a sleep study done to figure out what’s causing my chronic fatigue (you know, besides the depression), and blood work for good measure. My conversation with my doctor has me feeling more motivated to try and actually eat healthy foods, which is an important part of self-care.

Anyways, without further ado, here’s the post I wrote 5 days ago:

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The Epic Quest for a New Prescriber

At my last psychiatric appointment, my prescriber of nearly 3 years (an awesome advanced practice nurse) informed me that she’s retiring – and the community mental health clinic where I’ve been receiving care isn’t hiring a replacement. There wasn’t any offer to help me find a new prescriber or set me up with one. She just gave me a list of numbers to call, and sent me on my way.

I knew I should’ve started the search immediately, but I was stressed out by the idea so I did what I do best: I procrastinated. I got distracted. I focused on just about everything else. To be fair, “the incident” happened soon afterward; I needed time and energy to recover from that. (Things are going well, by the way, update pending.)

Two months have passed.

Somehow my lamotrigine & clonazepam prescription refill cycles got de-synchronized, so I’m in a kind of weird situation. I used the last lamotrigine refill a few days ago; “additional refills require authorization.” I have 26 full doses left, including today’s. There’s still one more refill on the clonazepam.

So it’s crunch time. I need to find some way to refill these medications – preferably before I run out or resort to cutting pills in half. I honestly fear for my life if I have a disruption in access to my meds – if not my physical life, my ability to continue my activism and maintain healthy relationships. Perhaps more importantly, I fear losing the ability to do the things I need to improve my life – such as completing my degree, finding a job that pays a living wage, consistently functioning well in that job, and learning how to keep my home from becoming an unlivable nightmare. Even more importantly, I fear losing the ability to take care of myself, which includes the ironically (read: cruelly) daunting task of accessing and engaging in treatment.

These fears are among the most potent triggers for my worst depressive symptoms.

Oh, and by the way, my state just cut funding to community mental health. Clinics are closing or cutting whatever (whomever) they must to try and stay afloat. My current clinic no longer serves clients with private insurance, and it had to let go of its front desk staff.

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Star Trek: Next Generation characters Picard and Riker both facepalming. The text reads: “Double Faceplam. For when one facepalm doesn’t cut it.”

So, yesterday, I began The Search. My counselor (who helps me with behavioral approaches to wellness) had suggested that my primary care doctor could possibly authorize refills, so I called his office. They said he “might” be able to, “depending on [my] situation,” so I made an appointment. I’m hoping he can authorize a one month supply of the lamotrigine, and if necessary I can return to him for a three month supply of both medications. (Clonazepam is a controlled substance, so any ‘new’ prescriptions not filled within 30 days expire and need to be reauthorized – at least in my state.)

Even if my primary care doctor can help me, seeing him for psychiatric consultations is not sustainable. I don’t have, nor do I anticipate developing, the rapport I’d need to literally trust him with my brain. I need a specialist who really knows what they’re doing, especially if and when it becomes necessary to make adjustments to my medications. (Which may be soon, I’m still trying to figure out to what degree my current problems can be addressed through music therapy and changes in behavior, vs meds.)

Ideally I’d like to switch to the other prescriber at my current clinic, whom Fox has been seeing and seems to like. If not her, perhaps someone at another location in the same agency – surely that would provide some consistency of care, right? I called the intake office; the person who answered seemed surprised I hadn’t been referred to another prescriber. “Well, you might want to call the other numbers on your list, because we’re currently scheduling for September.” “September?” “Yes.” I hung up on them.

I started making some additional calls. Bad number. We don’t do that. We’re not accepting new clients. We’re currently at capacity, but may be hiring someone, you can check back.

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My to-do list item on Habitica.com with several steps checked, reflecting the efforts I put in yesterday.

There are several additional numbers on my list, but most of the clinics are in urban areas that may be … inconvenient … to access. Middle class suburban snobbery aside, I anticipate that these locations are even more likely to be “at capacity” or otherwise struggling to serve clients for whom they’re the only choice.

So I’m gonna try calling intake for my current clinic/agency back, see what they can do for me. (I realized later that September is only about a month and a half away.) Hopefully my doctor can set me up through August, maybe September as well; if there’s any interruption in my access to meds it will hopefully be short enough that I’ll be okay. And I’d rather have this set as a backup in case my doctor can’t help me and/or I can’t find a prescriber elsewhere; the longer I wait to make the appointment, the later it will be and the more likely this is to become devastating.

Finding the Words

It’s been five weeks since … I still don’t have a label for it. It just is.

Well I guess I could say “my old wounds got torn open, setting me back a year or two in my recovery to how I felt and functioned about 18-24+ months ago.” (‘Recovery’ – to the degree to which I find that term relevant – isn’t a unidirectional, continuously-getting-better process. It’s complicated and messy and all over the place. So this can’t be a setback, just an unexpected and more-difficult-than-anticipated part of the journey. Perhaps a necessary part? It’s certainly reminded me of how vulnerable I am – but also how resilient I am.)

I’m inclined to say “that’s a bit melodramatic” but, well, it’s my truth. Coming back from that hasn’t been easy. For a while I took a break from activism, particularly the being-a-leader-in-a-grassroots-organization stuff. I’ve been getting back into it, almost to the point where I feel like I’m “pulling my weight” again – putting in effective work commensurate with the roles I have. But I’m also addicted to Terraria, my apartment is as messy as ever (what an understatement!), and my relationship with Fox … let’s just say both my therapists seem to agree it should be my primary focus. And one basically suggested he should quit his job so he’ll have energy to put into our relationship.

It’s been about 3.5 weeks since I visited Ron in the hospital and 2.5 weeks since ze was released. Ze lost zir job and couldn’t go back to zir parents’ house because their terms were unreasonable to the point of being unhealthy, so ze is currently homeless. People are doing what they can to help and ze says ze feels better. Ze seems better too – most of the time. Sometimes zir “speech seems pressured” but it’s usually connected to particular topics, and it’s possible to move the conversation elsewhere. Ze listens to me.

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I forgot to refill my prescriptions until I ran out – of course on the day I was running late and had to rush out the door. I tried to put in the refill request for the clonazepam first, but was unsuccessful; somehow my prescriptions got de-synchronized so I was out of refills with that Rx number and I didn’t have the new one to put in. I was in crazy anxiety rush mode, so I didn’t try refilling the lamotrigine – even though it had 2 more refills with that Rx number.

I asked Fox to go to the pharmacy for me and he did, because he’s wonderful. He said (they said) they didn’t have anything in the system for me. I was tabling at a pride event and he had to leave for work and it was Sunday, so there wasn’t really any opportunity to follow through on anything.

On Monday I realized I should’ve tried to refill the lamotrigine, better to have one of my meds than neither, right? That was no problem, but I had to speak to a pharmacy representative to deal with the clonazepam. The person I talked to at the pharmacy had an irritating tone to her voice and was too nonchalant, like there was no problem with them not having the information necessary to make sure I have access to a medication that keeps me alive. She didn’t even try to be polite like saying ‘sorry’ – but she did offer to fax my prescriber. And she explained that the clonazepam prescription had expired because it’s a controlled substance, so it has to be filled within 30 days.

I walked to the pharmacy with my inner voices screaming, an irritable mess, barely holding myself together. By the time I got the lamotrigine my ears were ringing and my eyes were so full of static everything was in a darkened haze and I couldn’t think straight and everything felt completely WRONG. That was after missing one dose – and it’s not even that high a dose. I took the dose – better to at least take one of my meds, right? and everything cleared within minutes. The difference was noticeable to Ron over the phone.

I had to play phone tag with my prescriber for a couple days, but I was able to refill the clonazepam today. I didn’t notice as much as an effect when I took it, except that maybe I’m a bit calmer? And I was rather sleepy, I attributed it to waking early from a bad dream, but the medication is known to make people drowsy. Ron seemed surprised I’m able to function at all taking [my dose] of it every day.

To be honest, between what ze’s been telling me about it and what I’ve read online, I’m a bit wary about staying on the clonazepam. Apparently it’s habit forming and it’s better not to take it for extended periods of time. But my prescriber added it for a reason – I think because even with my mood stabilized I was still struggling with anxiety. And I don’t know if I wrote about this yet, but my prescriber is retiring, so I need to find a new one within the next month or two. I’d rather not change my meds until I’ve developed a good rapport with the new prescriber.

So, yay, I’m back on my meds! I anticipate that going a day without lamotrigine and two days without clonazepam will have thrown my levels off; it might take a while for them to get back to normal. And I’m a bit shaken by how profound my (withdrawal?) symptoms were before I took the lamotrigine. I’d come to accept that I’ll probably be taking these medications for the rest of my life, and I’d rather do so consistently than risk going back to how things were before I started taking them. Still, this was a rough reminder of how dependent I am.

No Stigma, No Shame, More Happiness

I saw this on Facebook and wanted to share it. As someone who both wears glasses and takes medication to keep my brain from trying to kill me, I feel it is an excellent analogy:

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The text reads:

“I wear glasses. Can I manage without glasses? Well, yes, probably. I could squint a lot, constantly move up close to anything I want to see, take the bus or a taxi if I want to go anywhere. I could just accept that I’ll never be able to see eagles flying in the sky or whales jumping out of the ocean.

But why? Why try so hard to manage life when I could just put on a pair of glasses? No one would ever suggest a near-sighted person should just work harder. No one would say ‘Maybe that’s just your normal’ to someone who needs glasses. They would say ‘Let’s go to the eye doctor and get you a prescription so you’re able to see again.’ You shouldn’t have to try so hard.”

– My doctor (paraphrased), when I expressed doubts about going back on an anti-depressant. (via webreakthenwebuild)

(via squidilydink)

This is such a good analogy because nobody thinks about it like this. If you wear glasses, you literally need constant use of a medical aid to experience the world like most people do. If it were anything besides glasses, that would be considered a disability. But needing glasses is an extremely common, visible, and accepted form of disability to the point that we don’t even consider it one, we just accept that some people need glasses and that’s perfectly normal and there’s nothing wrong with needing to rely on them.

That is how all disabilities and illnesses should be seen, and how we should look at treatment for them. You have a problem, and you need help dealing with it, and there’s nothing wrong with either of those things. That’s perfectly normal and that’s okay.

(via ninjarobotclone)

And there are a couple more lines but forgive me I don’t feel like typing them out. The important parts are quoted above.

Putting aside the issues of for-profit pharmaceutical companies, our limited understanding of how certain drugs affect the brain, abuses in the mental illness management system, and that our society is so fucked up at least a quarter of us meet the criteria for mental health diagnoses while the rest are just plain miserable …

While we work on fixing that stuff: some of us need medication (and/or therapy) to function, just like some of us need glasses to see, and that’s okay. There should be no stigma associated with it, no shame in engaging in treatment, etc. When I finally get around to acquiring my next pair of glasses, I look forward to picking out frames I like and feel confident wearing. Similarly, it feels really good to own the work I’m doing in therapy and the medications I take: to be honest and unapologetic about what I need to not only live but (dare I say it?) thrive. It’s part of who I am, similar to how my glasses are part of my style (or look, hehe).

Of course I’m fortunate in that I have access to the care I need and communities where talking about one’s therapist, medication, and/or mental health is … if not normal, at least accepted. It’s understood that we’re all people and we all have our issues, we all struggle sometimes and we all need support. That shouldn’t be a matter of me being fortunate, though, it should be normal – like how acceptance of people wearing glasses is normal now, where once wearing glasses was stigmatized.

Learn more about being stigma free, and take the pledge.

Solidarity.

Memorial Day

Content Note: In this post I express views that are strongly anti-war, anti-violence, and anti-militarism. I mean no disrespect to veterans, active duty military personnel, or military families.

Memorial Day is traditionally a day to honor those who have died during military service, particularly in war. It originated after the Civil War.

The parade in my town passes my street, just a couple doors down from my house. I’ve marched in it, as have my father and my dog. I don’t remember the last time I actively attended, but I hear the drums, bagpipes, and sirens every year. They bring back memories – this year, of what may have been the last time all three of us were at the parade together.

It hurts.

But this isn’t about me. It’s about the people who give their lives and sacrifice their mental health – for what? Gone are the days when we engaged in wars that were actually for something. Now we just have ongoing military conflict that could more accurately be described as terrorism, wasting millions or billions of dollars on the kinds of weapons we claim to be trying to prevent, devastating entire countries, ruining the lives of millions, creating refugees, and creating the very terrorists we claim to be fighting. For what? Corporate greed and US imperialism.

Our military personnel and veterans die of friendly fire and suicide, in service not to our country, but to the greed of the wealthiest people in the world. We shouldn’t just remember our soldiers, we shouldn’t even just mourn, we need to stand up for them. Demand an end to this wasteful violence.

And in the meantime, do whatever we can to protect and improve their mental health. (Also physical health, making sure they have access to healthy food, safe affordable housing, and a fair income whether they choose to work or not, etc.)

I feel like I “dropped the ball” on Mental Health Awareness Month, but there are still a couple days left in May. Today I’d like to share 2 links that seem particularly appropriate:

Veterans & Active Duty

The National Alliance on Mental Illness (NAMI) has information and links to resources for veterans and active duty personnel that may be helpful in protecting one’s career, accessing mental health services, assisting fellow soldiers, and transitioning to civilian life.

Family Members & Caregivers

Members of military families, or probably any family, may benefit from the information and resources offered by NAMI. Please note that “the information here” is linked to in a separate column on the left side of the page.

Solidarity.

It’s been 2 weeks. Ron is still in the hospital; ze hopes to be released on Tuesday.

We’ve spoken on the phone several times; I’ve generally done my best to be supportive and our conversations have been mostly good.

I also visited zir once during the week. It felt a lot like how things had been around May Day, before the … crisis. I was happy to see zir and ze seemed calm, reasonable. We walked part of the grounds and sat on a somewhat secluded bench. Ze asked me to play a song on guitar, so I did, carefully focusing on the music. Then ze handed me a composition book and put zir arm around me, leaning in as I reviewed its contents. It felt good to be close, but at the same time there were alarms going off in my head. This was not what Fox and I had agreed would be appropriate for our first rendezvous, and I was allowing Ron to overstep the boundaries I’d promised to myself.

We talked and ze stroked my arm and hair and kissed me and it was wonderful. But then ze had both arms around me, essentially, and was leaning in …

“We shouldn’t get too into this right now,” I said, gently but firmly.

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