SSDI, food stamps, & medication

My Social Security Disability lawyer Michael Bertics met with me about my case. He’s confident we will have a new SSDI hearing before the end of the year, following his win with the district court judge. It’s unknown whether it will be with the same judge who screwed up the first time, Joseph Brinkley.

I’ve gotten my food stamps. It was a battle to get this done, and they were prorated to only half my benefits because I ‘didn’t get the information in on time.’ I decided it wasn’t worth the battle to argue that yes, I absolutely did, but as happened many times before, what I sent in was somehow lost. I was given food and a rice cooker to help me last, for which I’m profoundly grateful.

The local food bank is bullshit. My experiences with it have shown me all I can get from there is rotting food, food I explicitly stated I was allergic to, food I can’t cook, and food I can’t eat because I don’t have other needed ingredients to make it. And that only after I have gotten a written referral from my therapist, driven the hour to get there, and waited an hour for a pathetic offering I can only get once per month. It’s a great concept, but my local food bank doesn’t actually feed me. I’m glad I qualify for food stamps so I have been able to eat and survive these past several years. It’s the only option and quite often it sucks but at least I can eat.

I’ve had mental health issues my entire life. I was abused from birth in myriad ways that crippled my development and showed up as myriad symptoms that confounded everyone, especially myself. I’ve seen an endless stream of different kinds of therapists from my tween years on. I’ve been put on all the medications, even some not prescribed for nightmares, sleep disturbances, persistent (and arguably valid) depression and trauma stemming from an inescapable and twisted life. Nothing worked, in part because it didn’t fix my living situation or make survival sustainable.

Each year as my situation has deteriorated and demanded more of me. My symptoms have worsened and paralyzed my capacity to take care of myself. Within this last year I grew so desperate I sought radical solutions. I felt sluggish and fogged by stress and constant flashbacks and physical pain. The medications prescribed for my conditions only served to compound the fog and inability to focus or do anything. Tranquilizers, sleep and pain medications slowed me more and more until I couldn’t shower, feed myself, get out of bed. SSRIs make me suicidal. SNRIs do nothing for me. Tricyclics either do nothing or put me in the hospital from adverse reactions. I’ve become increasingly unable to be around other people, partly due to my situation and partly from past trauma and social maladjustment during development from living with ongoing abuse.

I found some literature and articles that showed that in some cases, Adderall could potentially alleviate the most crippling of my symptoms, enough to enable me to function and have energy and focus to fight for survival. I took the information in to the nurse practitioner handling my medication, who I was able to see along with my therapist since North Carolina has a free mental health care program I qualified for. My NP was familiar with everything I brought in, so it was thankfully easy to make my case with her. For the first time I had medication that actually helped me.

At the end of May the entire medication management team left my place of treatment. Since then they have been unable to hire new NPs. I’m told that part of the reason for this is that last year there were no NP graduates qualified to administer mental health prescriptions from the sole local program. Their solution has been to use video conferencing to have patients be seen by NPs in western NC.

Everyone receiving treatment there has suffered as a result. We’re no longer seeing the same NP from visit to visit. Many of us with prescriptions for controlled substances have had trouble physically getting the prescriptions to our pharmacies to be filled before we run out. Some with us severe mental illnesses have had significant gaps and problems with medication and were unable to be seen for emergencies related to medication. The appointments, which used to be 15 minutes, now last up to an hour. Every new NP is having to get to know every patient every time. There aren’t any appointment times open until October even for those who have to get new prescriptions written each month. Many of us wait an hour to be seen at all. Everything takes more time and effort for us clients that we may not have.

Even though I have been prescribed Adderall by multiple NPs and taken it for eight months, every time since the beginning of June I was having to argue my case again and NPs have ranged from skeptical to the latest, unwilling to write a prescription out of a professed fear of being audited and having the prescription called into question since I don’t currently have an ADHD diagnosis. I have been given one final month of medication and in that time I’m going to have to submit to a psychological evaluation no one is qualified to give where I’m getting treatment, necessitating a referral and appointment. I don’t know how long that will take or if it will come at a cost I can’t afford, or even if it will result in a diagnosis that enables me to easily get the only medication that has ever helped me in 25 years. Additionally it demands even more from me that I don’t always have, because I’m struggling with so much else to get my basic needs met and survive day-to-day.

It’s terrifying to think of being crippled even further by no longer having any medication that works to help me meet these challenges. I can’t function anymore without the medication, and even with it I’m worse off symptomatically than I was this time last year.

What’s especially traumatizing about this is my powerlessness to do anything about it. Very few places in this area see people in the state-funded mental health program, and the others are all much worse. I’m exploring every option I have from under a cloud of terror and helplessness.

I’m talking with people in the system who are familiar with everything. Though you may be tempted to offer advice, I’d appreciate it if you didn’t unless you have extensive knowledge about this area and actually know of a way for me to get this medication consistently without sacrificing more than I have to give. Especially my dwindling money and energy.

At the very least I can write about this situation, not to ask for help, but to raise awareness about what’s going on. That’s really all I’m doing here. That and venting about this bullshit. One of the things in my life that has consistently made everything worse is not talking about it, or allowing the fear of aggressive bad-advice-giving from people ill-informed about the actual realities of my situation to shut me up.

I appreciate that in people’s frustration and desire to help, they rush to ‘fix’ it by telling me what to do and put me in the position of having to manage my anger and despair and educate people as to why their advice is impractical. Which is absolutely exhausting and why I often don’t even talk about what’s happening. I can’t shoulder both the burdens of (1) these crises and (2) taking time and energy to try to politely explain myself to others who may be offended that I’m not taking their advice.

Advice itself is often triggering to me because I’m really sick of being told what to do instead of having someone help me do something productive. Even words attempting to cheer me up anger me because I don’t like being told what to feel, or to not be upset and use that anger to do something to try to fix things. All my life, my anger has been stigmatized, my complaints trivialized, and I’ve been treated as if I don’t know my own reality best. Or that I just haven’t thought of or tried every workable alternative. Like I’m not already redlining past my limits every day doing everything I can.

I know I’m not alone in this. A lot of us struggling to survive are exhausted by it, disillusioned, angry that systems near-universally believed to be solutions don’t actually work (or consistently work) for those of us depending on them. I think it invisiblizes the poor and disabled even more when we don’t have the time and energy to talk about these things and deal with both the violent hateful backlash and well-intentioned but uninformed allies and loved ones we cherish and want in our lives.

Obviously I have a lot of pent-up feelings and words about this.  I want you to know I appreciate you taking the time to read this. I know it can be uncomfortable to read about and frustrating to feel powerless to help. I know it can be frustrating if well-intentioned advice is offered but not apparently taken or responded to, because I don’t have the spoons to take care of the feelings of people I love who want to help. Please understand: I feel even more uncomfortable, frustrated, and powerless to live this way.

This is the best I can do.

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