Psych Meds and Me

Today, I received a phone call from the office of my Primary Care Physician (some might prefer “general Practitioner”). They asked me if I had an appointment with my psych doctor- yes- and then unleashed some horrific news on me. My insurance- Medicaid/the PA Access card- was turning down paying for my Cymbalta and they thought I should talk to the psych doctor about another medication.

For another person, this might just be poor news. For me, this is horrifying news. Earth shattering, maybe I should just kill myself now and get it over with news. You see, there’s a reason why It’s hard to get me to take certain medications. I was part of the generation of over medicated, pre-teen guinea pigs.

The earliest I remember taking Psych meds Was 4th grade, but it’s possible that I was put on them before that and I don’t remember because we did a lot of herbal medicine (Echinacea, St. John’s Wort, Tea Tree Oil, etc.) when I was younger. (My mom still does herbalism- and Comphrey Salve is amazing.) From then until I turned 14, it was nearly a new med every 2 or 3 months.

On one med they put me on when I was 12, I gained 60lbs in three months. Around the same age, I started having random pain for no reason which I thought was from the weight gain alone. After all, my mother’s second husband was always telling me how horrible being whatever I was was, and that if I hurt that was the reason. Now, over 10 years later, the pain that I brushed aside as being my fault because of my weight has been identified as Fibro myalgia. I have tics that I don’t remember having before those days, though I never mentioned them to anyone and my mother thought they must be voluntary. I was in placements that gave kids Seroquel in order to make putting a ward of emotionally distressed kids to bed easier. I was subjected to any number of medications whose use in minors had not been tested, or at least had not been published.
(I should post another time about the effect of yelling at someone and telling them they are faking does to someone long term. I’ve had it result in not getting even medical treatment until the last minute. Only so many times when you are called a malingerer before you start to believe it.)
When I was 14, I quit taking my medication, and did fairly well- my mother had left her second husband, I had a supportive psychiatrist, and a mom who was into lifestyle management. For several years, I struggled and faught so that I wouldn’t have to be put back on them. I was successful until I had a mental breakdown when I was 18 (My first adult hospitalization; there were 3 in total), when I was on something for a couple of months, again when a year later I was housebound, and again for brief periods during another two hospitalizations. Each time, despite my pleas that it was my anxiety that was the issue, not my depression, I was put on medication designed to treat depression or Mania. Each time, they were failures.
When I lost my insurance, I went a while without medication, and things were bad. I was too anxious to do much of anything by myself. Finally, this fall, I got Medicaid and my mother suggested Fibromyalgia and anxiety to my PCP, and they sent me home with a sample of Cymbalta. While I was anxious about being back on medication, This new medication was different. The parts of myself that I love weren’t blunted, but my General, non-triggered anxiety and the near constant nerve pain was gone. It really was like a magic pill, or the end of a long, hard journey. And one of my worse fears became that they would tell me that I had to stop taking the first thing that had actually worked.
So when the administrative employees at the office that was bought out when my PCP (who I’d had since 4th grade) moved to teach at Duke called, I freaked. I tried to explain that this was it, there was nothing else for me to do, and I was NOT going back through the Hell that had destroyed me as a child. That there had to be something. . . But the employee was horrible, unsympathetic, and insistent that I would have to do the guessing game again. I hung up on her.
At first I tried calling my best friend, but his phone was off. *peers archly in his direction* I tried my mother, but only got her answering machine- where I left a surely unintelligible message between sobs. I turned on glee and tried to watch it, but I barely remember it. One of my cats- Tribble Magoo- came over to me, leaned against me, and started purring at me in an effeort to calm me.
Eventually I called Ms. Janet, my neighbor. Explaining who exactly Janet is is a long story, but she’s in short a family friend with experience with disability issues. Between fits of sobbing, I explained what had happened. She was FURIOUS. you see, in cases like mine where other options have been exhausted, Cymbalta will e paid for as a medical necessity under Medicaid- but only when the doctor does their due diligence.
Now, the new people at the office have lost sight of folks as people, and the new owner really does treat people like case numbers (they also lost my whole family’s medical records dating back to 1996) and a hassle. There’s only one person there who actually listened to me but the amount of power he holds in that practice is limited. In short, that they have become like this is both horrifying and makes the failure to fight for my needs almost expected.
Tomorrow, Janet and I will be finding me a new doctor, and I will be writing a letter to my old practice informing them EXACTLY why I am leaving.
Sadly, there are people who don’t have family and friends to fight for them. Even though I have a lot of change that I am scared of, and lots of tears to go yet, at least I have supportive friends and family.

AutSpks Once Again Demonizes Autism

I heard about this right before bed last night, and in the mean time the Autistic Community has made many valid points. Here’s the Run Down, and the Round Up

The Run Down

AutismSpeaks sent out a call for video submissions in a way that was fairly innocuous- in fact, it used language such as “a bright spot on Autism” that might indicate something positive and uplifting. You can see the call for submissions here.* This was for a United Nations-Autism Speaks conference.

Red flag number one (other than the fact that it’s an AutismSpeaks production) is the release forms.* This is for release of the footage parents submitted, and includes that the signer of the release is signing for friends and family as well as themselves. Now, I might have this wrong, but everytime I’ve worked with a photographer or with a non-profit who was taking photographs for publicity projects, if a release form was not signed by even ONE adult (or parent of a minor) depicted, the entire photo was a wash.

In this case, they might be safe as the clause does indicate that the signer is acting on behalf of everyone in the video, though it is phrased as the signer giving permission for the images of self, friends, and family. It does not say that by signing it they are saying that they have aquired permission and thus are acting on behalf of said friends and family. So even if a friend or family member did not give informed consent (if an adult, or parent, have read the release and consented to the signer acting on behalf of the party) it ends up being the signer’s fault and is sealed by this final phrase: “I further represent and warrant that I
have the right to give this consent and no other consents are required.”

Wording means everything in legalese.

The form also uses wording that would tip off some people, such as “global health crisis of autism” but perhaps not your general parent, particularly those of newly diagnosed children.

The actual video is. . . well, the only word I can think of is “appalling” and even “blatently Offensive.” (If you don’t think you can handle the video, the wonderful Codeman38 has transcribed it on the Livejournal Aspergers community.)



My response (in 500 chracters or less, as that’s Youtube’s character limit):

I find this video offensive, not only on behalf´╗┐ of myself, but also on behalf of my grandmother, an Aspergers Autistic, several Aunts, and even my cousin (Dx’d HFA, now Dx’d Aspergers due to early social supports and encouraging interests in sports as a family).

I am offended on behalf of my mother, whose love & pride & acceptance of ALL parts of who I am allowed me to progress even when instructors and Support Staff said I’d fail.

I am offended, & must say that AutSpks does NOT Speak for me.

I’d encourage you to go ahead to the site link and leave a comment and/or rate DOWN this video.

I’d like to additionally add that I’m disappointed in both Alfonso Cuaron and Billy Mann for their involvement in this. I have in the past admired Cuaron’s style, so this was even more of a disappointment for me. Shame on you both.

Community Response (Or the Round Up)

The community has had a huge response. Here are some responses (and feel free to link me to others!)

Cat in a Dog’s World has a fabulous response with some ethical questions and why we object.

. . . As well as on the use of the Embaressment Trope and a script for a parody.
ASAN has issued a press release on the matter.
ASAN of Northern VA has an analysis of the video worth reading.
The afore mentioned post by codeman38 in the Aspergers Community on LJ.
Kowalski has some parody suggestions!
LeftBrainRightBrain has several posts on the topic.
Asperger Square 8 Has some Counter-Advertisements.
Club 166 Comments on it extending the Ransom Notes hoopla.
DJ has written an excellent post that includes an “I Am AutismSpeaks” script.
Codeman38 has posted on his own blog.

-I left to visit the afore mentioned Grandmother, and it went on!

* I have saved these to my harddrive in case of site take down.