Guest Post: Advocating for ME During AD by Cassandra Brandt

(Cassandra Brandt is a regular guest writer for SPINALpedia and a C4 quadriplegic and mom from Arizona. She also writes for Ability360.org and is the author of “Iron Girl: a memoir”)

When you sustain a spinal cord injury you have to become an expert on your disability. Staying healthy, and even staying alive is dependent on getting good medical care from doctors who understand spinal cord injuries.

Understanding as much as possible about how your body works now can help you determine whether you’re receiving the proper care that you need.

I dread going to my local emergency room. I’m pretty sure I am the only complete SCI quadriplegic these doctors have ever seen.

The staff are very rarely versed on autonomic dysreflexia, unfortunately the most common reason for me to end up needing to get checked out at the hospital. The term rolls rather easily off my tongue after years of saying it but seldom do hospital staff repeat it back correctly.

AD affects every SCI survivor differently, but nearly all of us experience it at some point.

We can often feel it coming on. Muscle spasms get worse. Blood pressure jumps, heart rate may rise, and we might sweat or get goose bumps. We might get an intense headache, too.

We know to check for a source of the problem. We check for a blocked catheter, constipation, a pinch or wound, a UTI.

If possible, we fix the problem.

We sit upright and perform our checks.

If none is found and hypertension cannot be decreased we might go to the hospital to have professionals look harder.

When I was injured seven years ago I did my rehab at one of the best neurological centers in the world. The therapists there educated me all about my diagnosis.

They warned me about going home to live in an isolated rural community where good doctors don’t want to commute or live.

It’s so scary to KNOW there’s something wrong with my body, but the doctor treating me doesn’t understand my condition.

Autonomic Dysreflexia can kill a quadriplegic, and it does, all the time.

Knowing how to address it saves our lives. In rehab, I was told to ALWAYS LOOK FOR A REASON.

For me, it’s usually a kinked catheter, a UTI, or constipation.

Last ER visit the doctor rolled his eyes when  I argued this. He then sauntered out of the room saying we could agree to disagree.

This is my life!! I’m not even 40! I have goals! People love me!

Even now the lump forms in my throat and indignant tears prick my eyes.

I know what AD is and when I am having it!

In an instant a headache begins to pierce my head behind both ears. Nerve pain rushes through my arms and legs which spasm violently. Suddenly I feel my heart pounding hard against my chest, as if I have just run for my life.

Because anxiety is a symptom of AD paramedics and hospital staff often think I’m just having an anxiety attack. Panic attacks are hard, too. I know because I have had them. I also know because I have had them that this is not what’s happening when I get autonomic dysreflexia.

After two nights and lots of tests I went home, only to return two days later begging for more tests after more mysterious BP spikes. “Are you just going to come in every time it happens?” The doctor scoffed.

“Yes, Doc. I want to live as much as you want to live.”

I demanded the tests ran again. This time they found a few things: elevated levels of troponin in my heart indicating trauma, and a pretty major thyroid issue. Now I have a cardiologist and I can only hope he knows a little bit about SCI.

I have become biased against small-town doctors. I am also biased against male doctors who assume women are just hysterical. I am alive because I advocate for myself. Disabled Lives Matter!!!

I carry around a little card in my wallet explaining AD. It has helped the local paramedics understand my AD but of course the doctors always think they know better. How grateful I am that AD is taken seriously at my current group home. I will not die of something that could be easily remedied on their watch.

As for the hospital, I can only try to educate them and remain stern with them so they know, I’m not going down without a fight.

–  Check out her book Iron Girl: a memoir

– Cassandra Brandt on Facebook

Read Cassandra’s past posts here