Monday, December 22, 2014

Putting my best foot forward

This photo was taken last Sunday during our weekly rehab walk. Until recently, I couldn't ascend or descent stairs, even a short flight like this one. I still need a railing, though.

From the beginning of my rehabilitation, much of my physical therapy has come from simply trying to do things I always took for granted. When I started to grow sprouts, for instance, I found it difficult to do without carrying the sprouts and the water containers to sink with both hands, so I started to walking the few feet to the sink without my walker or cane. Now I do it all the time, although I look a bit like Frankenstein testing out his newly grafted legs when I do it. My right leg continues to be weaker than my left leg, though I'm strongly right-handed (and right-legged).

According to my neurologist, this weakness is due to my six-week coma, not the multiple strokes on both sides of my brain. It could've been caused by something as simple as the way I was a lying during the coma. At any rate, my right leg has gotten quite a bit stronger, though it still feels slightly numb. And when I walk on it unaided, I come down on it heavily. Though I walk much more smoothly with a cane, I suspect that the short stints of walking unsupported has helped my right leg. When I was in the nursing home, the leg felt like it was a solid block of ice. And yet, I was also experiencing extremely painful spasms in the foot. I started asking my loved ones to massage the foot, which usually helped but sometimes made the spasms worse. The foot was both sensitive and numb. I was given some medicines to reduce the spasms and pain. I was already taking one of them, and the second drug may have helped a little. Eventually, I bought some vibrating slippers, and they eased the pain quite a bit. My neurologist thinks this may be because they distracted the nerves.

I still use the slippers now, though less and less frequently. Mostly, I'm using them for comfort when I'm sleeping because they're soothing. But I don't really need them anymore. The spasms are finally gone.

Tuesday, December 16, 2014


The pillows by my side and under my head were used to improve my comfort and to prop me up while I was eating because I wasn't yet strong enough to sit up or raise my head on my own.

My illness and recovery have given me a kind of sneak-preview of what it's like to be elderly. Perhaps I had it a little easier because my caretakers at the nursing home knew that I was completely aware. In fact, I was a bit of a pain in the ass, especially at first, since I knew what I needed to make myself comfortable, though I had trouble communicating that thanks to the tracheostomy tube in my throat. I even had difficulty telling my caretakers that I wanted a pencil and paper so I could write down my wishes. That was difficult enough once I got them, since I didn't have good control of my hands after the coma. To write posts on Friends of the Mountain Dulcimer using the Kindle Fire Keith bought me to use in the nursing home, I had to cradle the stylus in my hand like I had severe arthritis,

The certified nursing assistants (CNAs) had an especially difficult time in my room because there was another patient about my age who also couldn't speak due to a trach. I don't know Vilma's story, but I was told that she had a similar experience to mine, including the coma and seemingly miraculous recovery. Apparently, she and I were among the top three recovery stars in the nursing home. Vilma was diabetic, so I speculated that she might have gone into a diabetic coma. She wasn't paralyzed like she would've been if she had a clot-caused stroke. My strokes were caused by my plummeting blood pressure due to septic shock, and the watershed brain damage I incurred didn't cause lasting disability. At any rate, Vilma was apparently experiencing a lot of pain, but she was having trouble communicating what she needed to make her comfortable, just as I was.

Country Villa Sheraton was a pretty good nursing home, but the CNAs were terribly overstretched. They would get busy in other rooms and wouldn't be able to get to you quickly after you pressed the call button. That was a problem if you needed a bedpan right away. It got to be such an issue that I finally requested a diaper. I would often have no choice but to use it when a CNA couldn't get to me in time. I can't begin to describe how humiliating it is to have your diaper changed when you're an adult! My long coma and catheterization affected my ability to control my bladder functions, so I often didn't have much warning.

Sometimes, Vilma and I would silently team up to help each other. The CNAs didn't always remember to place the call button where you could reach it when changing bed linens or turning you over to prevent bedsores. When that happened to Vilma, which was fairly often--her call button was farther away from the bed than mine--she would start banging on the bed rail if she needed help. I would take up the clanging because my bed was closer to the door. She returned the favor for me a few times, as well.

I have irritable bowel syndrome (IBS). IBS can cause excruciating cramps, so it's painful in the best situations. Since I had reduced bowel control, as well, probably due to muscle weakness, the slowness of the response to my calls was often painful as well as embarrassing. And even when I did manage to get a bedpan in time, I would frequently be forced to wait a long time to get it removed again. One CNA left me in tears when he took more than half an hour to take the bed pan away. That is an extremely uncomfortable position to be in for that long. Talk about a pain in the ass! I finally got the attention of a nurse and begged her to get me some help. When the CNA was summoned back, he complained that he was busy. "She's been on that for half an hour!" the nurse admonished. I felt so incredibly helpless until the nurse intervened. I'm getting angry thinking about it even now!

I don't have to imagine what elderly people in nursing homes go through when they lose the ability to talk due to strokes or Alzheimer's disease. But even when I couldn't talk, I never lost the ability to complain. That came as no surprise to the people who know me. ;-)

Monday, December 8, 2014

Service without a smile

No, this isn't what I practically inhaled for breakfast this morning. The nursing home ground the hamburger back into ground beef (like a sloppy joe without the sauce to bind it) at first--after they finally allowed me to eat--to prevent me from choking or literally inhaling my food, due to my tracheostomy. It was incredibly difficult to eat that way!

Having a mobility disorder has its perks. People are unusually nice to you, saying hi as you pass and rushing to open doors for you. It also has plenty of disadvantages. All in all, I wouldn't recommend it. One service for the disabled that's both good and bad is Access Paratransit. Until I needed it, I never realized how ubiquitous the Access vans were on the road. Now I see them everywhere. It's an invaluable service to the disabled, and it's quite cheap as well--only $2.75 each way, with no tipping required. They also transport the elderly, which is a real boon to seniors who can no longer drive. Recently, the van I was riding in dropped off a woman visiting her husband at Country Villa Sheraton, the nursing home where I convalesced after my coma. It turns out that the driver has a mother in a different County Villa rehabilitation facility. As he drove me home, we fell into a conversation. I told him about my illness and explained about my research into covert cognition for my article, "Covert Cognition: My So-Called Near-Death Experience," which I submitted to Skeptical Inquirer a few weeks ago. I was pleasantly surprised that he didn't say my recovery was a miracle. Perhaps that was because I mentioned I'm a skeptic. Or maybe he's secular himself. At any rate, I thoroughly enjoyed the conversation.

Not all my experiences with Access have been so pleasant, however. The drivers are often late, for one thing. You have to add a lot of extra time if you're going to an appointment. I once got into a conversation with someone waiting for a late Access van. She vented her frustration as we commiserated, emphasis on the misery. Been there, ranted that. I've had to argue with drivers to get them to take me to the correct side of the building when I was being dropped off for my physical therapy appointments. They would often show up on that side, too, when they arrived to pick me up and I would miss the pick up. Keith has had to leave work to pick me up because of this a few times. A couple of times I was able to get them to send another van. They actually had the nerve to send me a warning letter about how many times I had missed pickups! Fortunately, they expunged the incidents from my record after I explained what happened. I could've been suspended from the service if that happened too many times.

The Access customer service representatives are government employees. Some of them have been quite nice, but others have been stereotypical government workers, surly, uncaring, and unhelpful. Today, for instance, they had me cursing up a storm (after I hung up).

I had to wake up a half-hour early to make a pickup at the ungodly hour of 6:20. They were picking me up for my annual Access re-evaluation. I had to scarf down my breakfast to the point of gagging to be ready on time. What's worse, I probably wouldn't even have had the evaluation again if the person doing my first one hadn't screwed it up. I explained to her about my Legionnaire's disease, which led to my six-week coma and caused multiple strokes on both sides of my brain. I also provided a sheet that showed my diagnoses. I say diagnoses because the list is now so long that it extends to a second page. The sheet I provided was that was time shorter, but it mentioned that I also had (at the time) high blood pressure and cholesterol, which were caused by the prednisone I've been taking to control my dermatomyositis. She put down that the reasons I was applying for Access were dermatomyositis, high blood pressure, and high cholesterol. There was nothing about the coma and multiple strokes, And instead of listing Legionnaires disease, she wrote that I had a history of severe pneumonia. Legionnaires disease is a severe pneumonia, so that's not entirely wrong, but Legionnaires disease is a different animal than simple pneumonia. Most severe pneumonias don't cause septic shock, which is what triggered the coma and strokes in the first place. Because of the slipshod job on my application, I was given a temporary approval instead of a permanent one. Now, I admit that it's my fault for not complaining at the time. I meant to, but it's usually such a pain to deal with their customer service, and I kept putting it off.

So, fast-forward to today. I got the callback, alerting me to the arrival of the van. I rushed outside into the chill of the morning, but there was no van there. Keith walked to the curb, but there no van to be seen in front of the neighboring houses, either. I girded my loins and called Access customer service. The person I talked to wasn't one of the nice ones. As I was on the hold, an Access van sped by. When the representative came back online, she said that the driver had reported that no one was at the pickup address and had left. I said that he must've gone to the wrong address because we were outside a minute after the callback. She repeated our address. But we were outside the whole time, I said, a little too loudly, but not quite shouting. She repeated my address, where the driver had supposedly been. Yes, he had the right address, but he went to the wrong one. We were right outside, I reiterated. I was practically spitting nails I was so angry! I did my best to lower my voice and asked if they could call him to come back. Several minutes on hold later, the answer came...nope. I called the regular reservation line, and no, I couldn't get a regular pickup, since Downtown LA is farther from Van Nuys than they usually will take you. They recommended that I call the customer service number again. I got the same surly and unhelpful representative. No, she said, we can't send another van. And, no, she doesn't know when my appointment was set. I could've had someone else drive me downtown, but Keith had to get to work, and Joella was still asleep, having just flown back home the day before after attending her granddaughter's wedding (and boy were her arms tired). She would've done it if I had asked, but I didn't want to.

So, now I'm lying here writing this post instead of waiting a few tedious hours at Access' cavernous evaluation center, with a room for a bus and a few Access vehicles (to test for the ability to board). Last night I printed out my health summary with annotations to help them understand the most critical ones listed. I'm hoping that I won't have to do this next year, but I have no confidence in the quality of the evaluators. In the meantime, I'll have call customer service to make a new appointment. The first time I called to arrange for the pickup, I tried to get a later pickup time. The surly representative (I'm not sure if it was the same one) said that it could be even earlier than 6:20. Oy gevalt!

Thursday, December 4, 2014

Standing on my own two feet

I remember how hard it was to stand while moving rings across a shower curtain-like bar during physical therapy in the nursing home. One of the most useful types of physical therapy I've received, however, was the balance exercises I was taught at my behest. I have some stroke damage that may have affected my balance, the only noticeable manifestation of the multiple strokes I experienced on both sides of my brain. According to my neurologist, my other physical problems are due to the deconditioning from my six weeks of coma. She told me that I should eventually get all my physical capabilities back, but I was getting frustrated because my wobbly walking was holding my progress back. I now have more walking endurance than before my coma and strokes, so I reasoned that more physical therapy to improve my walking wasn't the solution, and it turns out that I was right.

At any rate, during our trip to Long Beach's Aquarium of the Pacific Monday, I found myself unconsciously standing without any support to shoot photos. It was as if I had been standing my entire life. ;-) And I was standing steady enough to get good shots, too. Getting that balance therapy was one of the best decisions I ever made. This goes to show that you really do have to take charge of your own healthcare.

Here are some more photos we took at the aquarium, including many others of me standing unaided: Tumblr blog.

Tuesday, December 2, 2014

Racing Penguins

Yesterday, at the Aquarium of the Pacific. I have a cameo, next to my rollator.

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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.