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Showing posts with label ADHD. Show all posts
Showing posts with label ADHD. Show all posts

Friday, December 1, 2017

Hyperactive Students: Emerging from the ADHD Dark Ages


Miracle Girl: Hyperactive Students: Emerging from the ADHD Dark Ages

Hyperactive and ADD kids now receive academic aid, giving them a hand up instead of stiff arm in school. For ADHD students born in the hyperfast lane, schools are finally doing something to keep them from crashing and burning. 
Can I have a do-over for my childhood?

Saturday, September 9, 2017

Adult ADHD: Curing Chronic Brain Farts…and the Stinks They Cause

Miracle Girl: Adult ADHD: Curing Chronic Brain Farts…and the Stinks They Cause
Living with adult ADHD means getting used to frustration and embarrassment. But what to do when the very symptoms of ADHD prevent me from seeking treatment?
What would it take to make me stop procrastinating and finally seek help?

Thursday, August 3, 2017

Obamacare Cost-Sharing Reduction Payments: Their Money or Your Life


Miracle Girl: Obamacare Cost-Sharing Reduction Payments: Their Money or Your Life

With Trump continuing to hold Obamacare cost-sharing reduction payments hostage, will the ransom be paid by bipartisan congressional negotiations?
The foxes now own the henhouse. If Obamacare implodes it will be at the hands of President Trump.

Wednesday, May 31, 2017

Hyperactive-in-Chief: This is the Presidency on ADHD


Miracle Girl: Hyperactive-in-Chief: This is the Presidency on ADHD

Donald Trump displays the symptoms of ADHD. I should know, because I have it too. But maybe we should be glad that he can't get his act together. I know how crippling ADHD can be.
Fortunately, Donald Trump's case is severe.

Friday, March 11, 2016

SfMCR: The final battle to speak


In my coma-dream, suctioning was represented as being immersed in a tank filled with science fiction-inspired oxygen-permeated gel, which I could barely suck into my airways. Once awake, it felt like my lungs were being sucked out with a vacuum. Still, the plugs in my lungs were getting so bad that I kept having to give in and ask to be suctioned.

But suffering through the waterboarding-like suctioning wasn't the worst travail I was facing.

The morning after my breathing crisis caused by the plugs (see SfMCR: Struggling to breathe because of my trach), Ricardo came to my bed and said, "We're going to remove your speaking valve."

As if a dam had burst, tears instantly poured forth. "Please don't." I interpreted that as meaning they were going to remove it permanently, silencing me once again. "I need it!"

"But we have to. We have no choice. The valve is what's causing the plugs to form."*

"Isn't there something else we can do? I have to be able to speak," I sniffled.

"If we keep it in, it's going to delay your recovery. Don't you want to get better?"

I paused to think of a way out of this. Suddenly, a solution popped into my mind, "What if I let you take it out between visits?" My loved ones visited me in regular shifts, and that's when I most needed to communicate well the most.

He looked at me a minute, and said, "We can try that." Ricardo didn't look enthused. "But if you continue with the plugs, we're going to have to take it out."

And thus, when my visitors arrived, I would ring for an RT to reinsert my Passy-Muir valve, and when they left, I would signal again for the valve to be removed.

In between, I had to do my best to communicate with medical personnel using leak talking, which is as difficult to understand as it is to produce.

This was complicated by my warp-speed speaking style, which is related to my ADHD. Try as I might, I just couldn't force myself to slow down my speech or break my comments into shorter utterances. The best I could manage was to reduce the speed to subsonic.

This was a particular problem when trying to communicate with physical and occupational therapists because doing the exercises sapped me of precious breath.

Still, it was worth it to be able to continue speaking normally with my loved ones.

I was on powerful (and painful) intravenous antibiotics. Every time the younger nurse administered it to me, I had to fight back tears from the searing pain. The older, more experienced, nurse knew how to slowly feed the antibiotic into the catheter so it didn't hurt as badly.

But the excruciating injections paid off. Before long, I tested free of MRSA, and I wasn't an untouchable anymore.

A couple of weeks later, I no longer needed the speaking valve. Ricardo finally removed my trach.

As he was taking it out, Ricardo said he had known I was ready to have it out for some time. Later that day, Joseph broke into a big smile when he saw me without the trach. He told me that he could always tell when patients are ready for decannulation, and he had known that I was from the start. That's why, when it looked like he would be leaving Country Villa Sheraton, he warned me of Ricardo's excessive caution and advised to keep pushing for further weaning.
After my trach was disconnected from the ventilator. They fed me supplemental oxygen as a precaution. 
If I had been weaned faster, I wouldn't have needed the speaking valve for nearly as long, and most of this frustrating saga never would've occurred.**
After I had been red-capped, in preparation for decannulation.


*As I said in my last post, the folks at Passy-Muir, makers of the talking and eating valve, tell me that if my ventilator had been properly humidified, it would've prevented the formation of plugs. I will delve further into this subject in the next installment in this Scenes from My Coma Recovery series. Here is Part One, Part Two, Part Three, and a related SfMCR: Gaining the Power of the Pen.

**On the other hand, I also wouldn't have sold the essay I wrote about the drama of repeatedly losing my ability to speak. "Voiceless" will appear in Kaleidoscope, a semi-annual online literary magazine about disability, in either in July of 2017 or January, 2018. I will post a link to the essay when it comes out, so watch this space...eventually.

Enjoying a tater tot after the decannulation. I was wearing a shirt because that afternoon I had gone on a walk outside the nursing home.

Friday, November 20, 2015

Wearing the scarlet "A" (for anxiety)

My usually shapely calves look pillowy in this pic taken during my hospital stay. Note the blood pressure cuff left on my arm due to the constant heart rate monitoring.
I've had ADHD all my life. The H stands for hyperactivity, which is often accompanied by an anxious disposition. But having anxiety is not the same as suffering from an anxiety disorder. This propensity was probably what led my primary care physician to write anxiety disorder on my medical chart, after I began exhibiting high blood pressure whenever I saw him. When I tested my blood pressure at home, it was much lower, so I was diagnosed with white coat syndrome. That's when the label of anxiety disorder was added to my chart. I have to admit that I was the one who first suggested this diagnosis, since the only time I had ever had suffered from high blood pressure was when I experienced what was called a paradoxical reaction to a blood pressure medicine given to me because it can help control chronic migraines. Instead, I suddenly developed blood pressure so high that I could see the blood pulsing through the veins in my wrists. After I was taken of the meds, my BP returned to its usual level, slightly below normal.

But the problem with my self-diagnosis is that I didn't really feel all that nervous when I saw the doctor. My natural nervous energy does indeed increase my blood pressure readings somewhat, but I believe something else was going on.

This was in 2012, a time when I was beginning to show the symptoms of what would be eventually diagnosed as dermatomyositis. Indeed, the extensive rashes and muscle weakness I was suffering from were the very reason I had set up the first appointment. Unbeknownst to us, DM was in the process of attacking my muscles. The heart is a muscle.

But the damage was done. The label of anxiety disorder remained on my chart even after my DM was finally diagnosed. It rankled me every time I saw it in my after visit summary, but I never did anything about it. It was annoying, but seemed relatively harmless. That is, until I entered the hospital in February 2014, after coming down with a second bout of the (usually) rare Legionnaires' disease. Thanks, prednisone!

Beyond the Legionnaire's disease, which was fortunately caught before I slipped into another coma--been there, vegetated that--the ICU doctors were concerned about my soaring heart rate. Indeed, it was far higher than it had been when I had been mistakenly diagnosed with white coat syndrome. Tachycardia can be fatal, so the doctors were right to be worried. They tested me to see if it was positional tachycardia syndrome. In other words, if sitting up caused the problem. Nope. Their other tests could find no other cause.

And that's when one of the docs saw the words anxiety disorder in my chart. Aha!

He marched into my room, as Keith and I chatted, and abruptly told me that he was going to put me on an anti-anxiety medication.

I calmly told him that I didn't have an anxiety disorder.

"It's nothing to be embarrassed about," he said. "They're quite safe. Many people take these medications and find them very helpful for controlling their anxiety."

"But I don't have an anxiety disorder!" I insisted, my vehemence perhaps reinforcing his conclusion. "I have ADHD, which means I'm often hyper. Sometimes I do experience mild bouts of anxiety that pass quickly, like when I'm late for an appointment. That's a common symptom of ADHD. But having occasional bouts of anxiety, that don't affect my life in any real way, is not the same as having an anxiety disorder. No psychiatrist has every diagnosed me with an anxiety disorder." As I said this, I kicked myself for not doing anything about that galling diagnosis in my records.

"But we have to do something about your heart rate. It's too high; you're at risk for heart attack or stroke," he sputtered. Then he reiterated his previous comment.

Keith jumped in, "Could you please explain what qualifies you to make this diagnosis?"

"Her heart rate is dangerously high. We haven't been able to find a physical cause for her symptoms."

"And besides that?"

As Keith Socratically probed, it became evident that the doctor was simply assuming that I had to be suffering from anxiety. Suddenly, we realized why the doctors and other medical personnel kept telling me to relax. I was about as relaxed as possible for someone with a tube down her throat.

Round and round the conversation goes; where she stops, nobody knows. It didn't quite degenerate into shouting, but the atmosphere was charged enough to explain the hackles raised all around. Eventually, the doctor left, apparently miffed at how these two unreasonable people had reacted to his perfectly rational diagnosis. He struck us both as extremely arrogant.

But I will give him credit. Instead of pushing the point, he apparently went back and studied my charts more closely. And when he did, he noticed that I was on two very powerful blood pressure medications, at levels usually prescribed for heart failure patients. I had been taking those meds ever since I awoke from the coma, so I hadn't questioned them. He couldn't have known about my previous paradoxical effect experience because it happened when I was with a different medical group, so he came to this conclusion on his own. History had just repeated itself.

He began stepping down the meds while I was still in the hospital--discontinuing them immediately could've been dangerous. Instead, I was put on a regime that would eventually eliminate the meds entirely after I returned home. By the time the dose had been halved, the swelling in my legs apparent in the above photo had receded significantly. Suddenly, I found that my walking had improved by leaps and bound, without any actually leaping and bounding, of course. The pain and pressure my feet felt in shoes lessened, then finally disappeared completely. And finally, my blood pressure dropped. It's now back to slightly below normal. When I next saw my PCP, I asked him to remove the scarlet A from my records.

I'm now anxiety-free, or at least my records are.

Wednesday, August 26, 2015

Interview with the vampire...er, ex-night owl


Today, Simon Davis, a fellow skeptic who writes the Post Mortem column for VICE interviewed me about my coma experience and my Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience." His column focuses on death-related subjects. I did nearly die, after all. I've often joked that I came about as close to dying as you can get without actually dying. Plus, I did have a near-death experience, a subject that came up repeatedly in our conversation. Another topic that came up frequently was my coma-dream. I know that's a subject that often fascinates people. It would me, too, if it hadn't happened to me.

I thought I would be nervous, but apart from my usual ADHD-related nervous energy, I was fine. In fact, it was a lot of fun. Who doesn't like to talk about themselves?

It will be interesting to read his interview when it comes out. He's requested that I send him some photos, and I've sent him the first batch--the few pics taken while I was in the coma, plus the photo of me beside the graffiti that read, HOPE. I have to go through more so Simon's editor can pick the best.

And speaking of hope, I hope he mentions the plight of patients like me who are covertly aware, but are dismissed as hopeless vegetables. Somebody has to speak for them, because they certainly can't. The closest any have come was when they were lucky enough to be included in a covert cognition study. Scott Routley was asked by Dr. Adrian Owen if he was in pain. He answered no, using Dr. Owen's tennis/navigating familiar locations technique. Sadly, Scott died without ever regaining full consciousness. But before that, he gave hope that similar patients will someday be able to participate in their own care.

And I'm glad to know he wasn't in pain.

Monday, June 15, 2015

Miracle Girl


Now that my Skeptical Inquirer article, "Covert Cognition: My So-Called Near-Death Experience," has come out, I think it's a good time to address the issue of whether my recovery was a miracle or not.

If you're coming to this blog from the article, you probably come down on the same side of the question as I do.

After I awoke from my coma, I began posting responses to the well wishes of my friends on the dulcimer website, Friends of the Mountain Dulcimer. They had been lending Keith a great deal of kind support when it looked like I would almost certainly die. They continued to support me through my recovery. In one post, I jokingly called myself Miracle Girl because so many people had told me my recovery was a miracle. Many of my dulcimer friends were among them.

Knowing me, my friends undoubtedly knew that my Miracle Girl reference was sarcastic. And I did mention that I didn't believe in miracles. But I don't think they realized how thoroughly my skepticism colors my outlook, and how deeply ironic it was that so many people thought I had experienced an authentic miracle of God. You know, the kind they canonized saints over. I talk much more about this in my essay, "Without a Prayer of a Chance," which is tentatively scheduled for the October/November issue of Free Inquiry.

At any rate, while my recovery was indeed very unlikely--even my own doctors told my loved ones to give up hope--it's perfectly explicable medically, as I detailed in the SI article. Though I've had many nurses tell me my recovery was a miracle--including ones that treated me during the coma--I've never had a doctor tell me that. When doctors say there is only a one percent chance of survival, a few people are lucky enough to be in the one percent. I won the Golden Ticket. I remain amazed by my good fortune, however.

But didn't Kate Bainbridge deserve my special Golden Ticket, too? After all, I also drew the (eventual) Get out of Recovery Free card.Though she's very fortunate to have retained her mental capacities, as I did, she will never get the opportunity walk through beautiful gardens to further her recovery, something I've come to love. I'm sure she would even welcome the drudgery of riding an exercise bike six days a week. Kate cannot speak; I only lost that ability for a matter of months. She lost her fiance when she was still in a vegetative state, while my boyfriend has been my invaluable partner during my recovery. Her "miracle" sadly came with many caveats.

But faith isn't about evidence, and I personally don't have a problem with people having their faith strengthened by my recovery, especially the sincere people of faith who were praying for me. I imagine many atheists wouldn't feel that way. As I say in my most recent essay for the humanist market, "Sympathy for the Devil-Believers," to my believer friends, praying for me was the most meaningful form of support they could offer for me.

For non-believers, my survival holds a different lesson. I've emerged from the coma and my recovery a stronger and better person. I remain someone with many personal flaws, but I'm dealing with them better than I ever have. A big part of that is my severe case of ADHD. But I now realize that my ADHD is only an explanation, not an excuse. I'm exercising regularly and plan to keep it up after my recovery is over. I'm writing far more than I did before the coma. More importantly, I've finally taken charge of my life.

The lesson for non-believers is you can turn your life around, without God and without a brush with death (though that's what it took for me). Hopefully, most people won't require such a terrible slap upside their heads. You believe that you only have one life to live, so live it that way!

Just as my body healed itself, my true miracle came from within.
The self-affirming message reads, "I am strong and beautiful." Hey, I didn't write it--but I am strong, at least. The photo was taken on one of our rehab walks.

Wednesday, May 6, 2015

Me do it!


When I was a toddler, I had one of those laces with plastic beads that were probably choking hazards, since this was back in the Paleolithic Era. The end had become frayed, probably because I had chewed on it. I couldn't get the bead on and got so frustrated that I was red in the face. My mother attempted to help, but I held the lace tight and said, "Me do it!" Eventually, after much jabbing, I succeeded.

That personality trait has served me well during my recovery. But the opposite tendency often pulls many of us into a negative feedback loop.

Learning why you have a problem, whether it's physical or mental, can be freeing. Certainly, when I was diagnosed with dermatomyositis, that knowledge was crucial. Before the advent of prednisone, DM was often fatal. The treatment I received after the diagnosis arrested my muscle damage and allowed my skin and muscles to begin the healing process.

My ADHD, on the other hand, is a more complicated issue. I've known since childhood that I had a severe case of ADHD. And, I was re-diagnosed in adulthood. Though that knowledge has helped me to work toward mitigating some of the unfortunate tendencies brought about by ADHD, I've too often let it be an excuse that instead held me back from achieving as much as I could. I can't help it because... That knowledge can make you feel like you're fighting against overwhelming odds. This is not just my foible; I've seen this phenomenon in many other people. It's a universal human weakness.

But I think instead of looking at these very real circumstances as excuses, people (myself included) need to start seeing them as the enemy. "How dare you tell me that I can't_____(fill in the blank). I'll show you!"

I never gave walking too much thought until the ability was taken away from me. The stubborn, persistent toddler in me wasn't about to let my body tell me I couldn't do something I've done since I was that age. Me do it!

There are less dramatic ways to defy your body and do what it's telling you is impossible. Yeah, maybe you can't ride on a stationary bike (which is what I use) for an hour. But you can do it for a minute. If you increase that by a minute a week, in sixty weeks you'll be riding for an hour.

I'm starting to sound a bit like a self-help guru. Actually, I think self-help should be just that. And you don't have to pay $500 for a seminar or a video series for that. That's not self-help; it's just surrendering yourself to a huckster who is helping his or her self to your hard-earned money. No, you need to literally help yourself. And all it requires is that you tell your personal challenges, "Me do it!"

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Coma Girl

Coma Girl

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.