Chronic Pain Is Worse Than Writer’s Block

I don’t blog or write as much as I’d like to. There are a lot of reasons for this but the biggest one is that i live with chronic pain on a daily basis. Since I was injured in March 2005, I have not had a single day where I have not experienced some kind of pain.

My head and neck are my two main sources of pain but I also have to deal with soreness and aching in my shoulders, arms, hands, back, legs and feet at times.

The long and short of it is that pain makes it really hard to write. I don’t want to write when I’m in pain. There are a lot of days when I simply don’t care about stringing two words together. If I could’ve gotten away without writing today, I would have. My neck hurts like heck and I would love to just rest it on a pillow and read a book. But I know that if I want to be a better writer and activist, I need to write/blog more. So I’m forcing myself to type this. The pain makes it hard to concentrate, though. When I’m writing, I often stop several times to play a quick computer game or check Twitter.

The pain makes me doubt myself. It makes me think I have nothing to write about, nothing to blog about. All I can think to write about is my pain and who really wants to read about me whining about that? Yet chronic pain is a problem for me and so many other women, so it should be talked about, right? I feel torn up and confused inside because I don’t know how to make my personal experience with pain political. If this blog is about disability and feminism, I don’t want to just write about my own personal struggles. However, at the moment, my struggle with pain is very personal. It is disabling. It is what I am thinking about nearly every moment of every day.

Where does that leave this blog? I’m not sure. Rather than not post anything at all, I think I am going to start writing more about how pain and disability have affected me. I have no idea this will shake out but I hope you’ll keep reading.

xoxo,
Danine

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Five Years

Sunday was the anniversary of a really good day. A great day, in fact. It was the fifth anniversary of the day I was admitted to Froedtert Hospital in Milwaukee, Wis., where I where I stayed for the next two months. I’m sure most people wouldn’t commemorate the anniversary of the day they entered a hospital for two months, but April 11, 2005, was a day that changed my life.

The story really begins five weeks early, on March 2, 2005, when I was admitted to another hospital, also in Wisconsin. (I’ll call this hospital “Hospital X” for the simple fact that I don’t wish to give them free advertising on my blog, for various reasons.) I had been sent to Hospital X from my home in northern Wisconsin because I was having headaches and the doctors suspected my shunt was malfunctioning. (I have Dandy Walker syndrome and hydrocephalus, which produce excess cerebrospinal fluid, aka CSF, in the brain. If the CSF isn’t drained with a shunt, it puts pressure on the brain and bad things can happen. Including death.)

It’s a long story, but while I was at Hospital X, I had a lot of other days that changed my life. On March 5, 2005, I went into respiratory arrest (“coded”). I was intubated, put on a ventilator and transferred to the ICU. On March 6, 2005, I was extubated, after which I promptly coded again. That was fun. During this time, the paralysis settled in and by March 8, 2005, I was paralyzed from the neck down, including my vocal cords. In other words, I became a quadriplegic. I couldn’t speak and communicated by mouthing words and using letter boards. (More on this in a future post.) I spent most of my time at Hospital X in the ICU and experienced many oh-so-fun things like cardiomyopathy, pneumonia, blood clots, a subdural hematoma and countless procedures.

I was really, really, really sick and for a while, they didn’t expect me to live. But of course, I did. In early April, I was well enough to be transferred from the ICU to the regular neurology floor as the social workers and case workers made plans to transfer me to rehab. At that point, I had been in the hospital for over a month. I just wanted to go home. The reality hadn’t set in yet that I was a ventilator-dependent quadriplegic who needed total, and I do mean total, care. And bless me, I thought I could go home to my mom’s house, where she could take care of me 24-7, because moms are super-human, right? Yeah, right.

So it was that on April 11, 2005, I was transferred from Hospital X to the Spinal Cord Injury Center at Froedtert Hospital in Milwaukee, where I spent a week in the acute care. The doctors did their own tests and determined that I had probably had either a brain stem stroke or a spinal cord infarct at the C4 level. After a week, I moved to the rehab side of the unit, where I stayed until I went home on June 9, 2005.

Being in rehab at Froedtert was one of the best things that ever happened to me. (It was unbelievably hard, stressful and exhausting, but still one of the best experiences I’ve ever had.) When I got there, the doctors expected me to be a quadriplegic for life. My physical therapist didn’t care. He decided he would make the most out of whatever time he had to work with me and little by little, just got me moving. By the time I left, I was walking about fifty feet with a walker. I had gotten a lot of mobility in my left hand and arm, thanks to my occupational therapist. The right hand and arm would come back later. My speech therapist rocked so I was even talking again, although I couldn’t swallow well enough to eat. That would happen later, too.

I left Froedtert on June 9, 2005. That was a good day, too. Hard, but good.

I wanted to write this post because I have spent the past month and a half in a state of remembrance. I’ve wanted to talk and blog about my experiences but it’s hard when I haven’t explained the back story. I plan to refer to this post in the coming days, weeks and months so I hope you come back and keep reading. Thanks!

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Medicaid Is NOT A "Medical Ghetto", Senator Alexander

During Saturday’s debate on the cloture vote, Sen. Lamar Alexander (R-TN) said the proposed health care reform bill is:

“arrogant in its dumping of 15 million low-income Americans into a medical ghetto called Medicaid that none of us or any of our families would ever want to be a part of for our health care.”

Here’s the video:

I have Medicaid. It is not a “medical ghetto”. Without Medicaid, I would not be walking or talking today. I would not be typing this sentence. I would not be able to swallow food or get dressed by myself.

Medicaid is a good program. It paid for two more weeks of inpatient rehabilitation at the Spinal Cord Injury Center at Froedtert Hospital in Milwaukee, WI, than United HealthCare would have. Those extra two weeks are the reason I’m walking today.

Medicaid paid for as much outpatient physical, occupational and acquatic therapy as I needed when I got home. United HealthCare would have only paid for twenty sessions each per year. Without Medicaid, I would not have been able to go to physical therapy 2-3 times a week for eleven months, occupational therapy 2 times a week for six months and aquatic therapy once a week for five months.

Medicaid has paid for all of my doctors’ appointments. I have been able to see all of the specialists I needed, no questions asked.

Medicaid has kept me alive and put me back on the road to recovery. It is not a “medical ghetto”. It is a vitally important (and yes, imperfect) safety net for millions of Americans.

Senator Alexander, you would be lucky to have Medicaid.

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