Yeah, the dog can come in.

I was confronted the other day in a grocery store by an older man in an electric scooter. He yelled at me for having a dog in the grocery store. Needless to say I attempted to explain that the dog was a service dog, and therefore, legally entitled to be in the store. He wouldn't hear it and declared that he was calling the manager. I told him he was more than welcome to do that and walked away. Several other patrons had come to my defense. Kind people who tried to explain to him that she was allowed to be there. It made me smile to know that so many people were aware of the laws regarding access for service animals. However, the irony was that the person who was so vocal appeared disabled himself. Which got me to thinking, how is this man so unfamiliar with the laws that apply to those with disabilities. It has occurred to me that while I am physically impaired, I am still able to learn and adapt. I can look online and find information on laws and my civil rights as a disabled person. Perhaps this man was unable to do the same. I can certainly say that they do not hand you a user's manual on how to be disabled. There is no brochure "welcome to the disabled world" or orientation to the wonderful world of impairment. So how do we ensure that people not only know their rights, but know how to access resources that can improve their lives? Education is the key. Perhaps in addition to the insurance information or benefits summaries, Social Security could include information on civil rights and disablities. For now though, I had to settle for walking away from someone who was angry and intolerant. But as I walked away, shocked at the man's hostility, all I could think was... hey that guy really needs a service dog.

Florence

Florence Nightingale is often referred to as the mother of modern nursing. She was an innovator, a problem-solver, and a realist. She saw what needed to be done, and set about doing it. When she was done, she had taught an entirely new way to provide nursing care to patients. Her focus was on the basics, cleanliness, good nutrition, and discipline.

What most people don't know about Florence is that she was disabled by a chronic illness. She returned from the Crimean Wars devastated by typhoid fever. She never recovered. In fact, she spent the rest of her life almost entirely in her home in Britain. She changed the world from her bed and drawing room.

It is a lesson we can take to heart. Florence was priviledged and wealthy, able to rely upon family, friends, and servants to assist her through her illness. But in comparison, she has so much less than we do today. Without the benefit of the internet, phone service, or the television, she was able to develop and communicate an entirely new method for patient care. What changes can we bring to the world, strengthened by our connections and social media as a tool to share great ideas? Think of the Florence, living with illness, and her accomplishments, and know that greatness is not in the body, it is in the mind.

The Tail-Wag of Eternal Optimism

My service dog Lyla has taught me lesson in the past two months. As I have struggled with physical obstacles and sadness over loss of function so fiercely fought for, I have tried to remember that there is always hope. When Lyla lays beside me day and night, there even when I am at my worse, she always seems to hold out hope that today will be the day we will go out again. She hopes that maybe, just maybe, I will feel well enough to throw her frisbee or toss her ball. She never, ever gives up hope. On dark days of total orthostatic intolerance, she gives me a look with her big brown eyes and a tiny wag of her tail. I call it the tail-wag of eternal optimism. And isn't that exactly what dogs are? The eternally optimistic? They know you will drop food eventually, want to go for walkies one day, and give in to the urge to play with slobbery toys at some point. It is a lesson to live by, that there is always some reason to hope, some reason to be happy, and some reason to wag your tail.

Let the Torture Commence

The doctors at Vanderbilt often are ahead of other centers on research in POTS. However, this summer they were usurped by a doctor in Texas who did some fascinating research into primary POTS patients. These patients (to my understanding only 19 which is a small sample size indeed) were all young women (with maybe a man or two for good measure) who had adolescent onset POTS. In many cases, POTS strikes young women in their teen years following puberty and perhaps some viral or bacterial infection. The theory has been that these teens have a primary form of POTS as a result of deconditioning or a partial dysautonomia. The study done in Texas showed that, in actuality, these young people had small hearts that produced inadequate stroke volumes.

What does that mean? Well, stroke volume is the amount of blood your heart pumps out into the body with each beat. This amount multiplied by the heart rate creates a number called cardiac output (ml stroke volume X bpm heart rate= cardiac output). Cardiac output is therefore the amount of blood pumped by the heart every minute. As the stroke volume decreases, the body increase the heart rate to compensate and maintain a normal cardiac output, hence the hallmark tachycardia of the POTS patient.

It was also observed that for whatever reason, these young women also had lower blood volume than normal. The study was fascinating, in that is found a clear and measurable deficit in stroke volume and blood volume. But the researchers did not stop there. They wanted to show a way to change this state in their patients. And so they used recumbent exercise in the form of a rowing machine, to recondition their patients. They also found that for these young women, the exercise helped them to increase their blood volume (although there is no accounting for outlying factors such a fluid intake) and improve stroke volume. We all know that the more fit an individual is, the more efficient the heart works. This study capitalized on this concept, by reconditioning the patients in a manner that was tolerable for the patients (difficult to do for people whose heart rates are miserably high).

This study offers great hope for many POTS patients, but comes with several serious caveats. One, the sample size was small. Two the sample size was limited to those who were young and had a form of POTS that is poorly understood to start with. There was no sample for those with other forms of POTS, concurrent disease and disorders, or secondary POTS. These were otherwise healthy participants, with a clear pathophsyiological abnormality, and a clear treatment option. Reality is never that controlled, therefore these results cannot be generalized. But worse, they negated any sense of respect for their work from the POTS community at large by carelessly referring to their newly identified syndrome as "the Grinch syndrome" (so called because of the small heart). It is hard to take any scientist seriously who relates you and your condition to a Dr. Seuss character. Still, this information could be helpful to some.

In my, I was willing to try, and so investing in a small rowing machine for home use. After looking at the box on my floor for two months while my Hickman insertion site healed, I finally assembled it today. Well, in all honesty a friend of mine did it while I looked on and added comic relief. When it was completed, I sat on my new machine with anticipation. Then I flailed around on the thing for a few minutes while I tried to coordinate my motions enough to make the thing work. Once I figured it out, it was surprisingly easy. Or so I thought.

After a few minutes I was not only out of breath, but my heart rate was 180 and my muscles were burning. I crawled off with jello legs and sat nearby while my friend easily did three times the work. I was actually rather impressed that I did it at all. But within a few hours, my pride was quashed by the burning pain my shoulder (never a great joint that has nagged me for years now) and the movement of cramps running up and down my back muscles. It was charming. Still, for me it was a revelation. Is this something that I can truly do? It was hard when doing it, and it would seem that can build up to more slowly without the orthostatic challenge of an upright exercise. So although my body hurts madly, I feel a little bit of hope again. And that alone is worth the trouble. :)

Learning something new

I am of the firm belief that there is something new to be learned every single day. Today I learned something interesting that had never really been explained to me before. For several years now my WBC has run high, just about 14.5. There was not ever an infection to explain this, and we just assumed it was just another part of my weird normal. This summer after starting Plaquenil, my WBCs dropped to a normal 8. Being tested again today, it was still 8. I mentioned this to the hematologist, more as a side note than anything else. He explained that high levels of epinephrine causes a release of a specific kind of WBC that is from the peripheral vasculature. So, at last a reasonable explination for something. Using the Plaquenil did not change the epinephrine, but as it limits the immune response, the release of WBCs was also reduced. I thought this was proof that there is always something new to learn, and something new to discover about your body. Even if nothing else comes from this visit, it was worth it just to learn. Oh and to be reminded that I need to shave my legs before visits...oops. :)

Lemon tree very pretty...

What, you may ask, does a lemon tree have to do with dysautonomia? Consider the classic drug induced ballad by Peter, Paul, and Mary "Lemon Tree". In the song the lemon tree is very pretty, but the lemon fruit is bitter. Imagine a hapless fellow walking into an orchard of lemon trees, their blossoms lovely, and the air redolent with citrus. An unknowing person might take up a lemon and, unsuspecting, take a bit of that fruit. The inside of the fruit is not what it looks like from the outside. And this is the great irony of invisible illness.

All people who battle a disease or disorder that is not visibly obvious to others have what is called an invisible illness. We may have a lovely countenance, much like the lemon (although some of us are a bit riper than others), but like the song says... the fruit is impossible to eat. Our bodies have betrayed us just as much as anyone with an obvious disorder, and yet we are always doubted for the lack of proof. The other side of the coin is that we are able to hide our diseases from others if we so wish. We can pull ourselves together and push through a holiday or special event, but inside we pay a price. There are moments when I think how much I would like to have a display for my vital signs that I could wear on my sleeve or chest, so everyone around can see that while we are chatting my resting heart rate is 120 bpm, or my BP is 190/150. Even better, then they could see what happens when I stand up. But I think of the lemon tree, and am reminded that it does not have to advertise for people to know what is inside. One bitter taste and you get the hint.

But you are always tired!

I often catch myself saying "I'm so tired" over and over again on bad days. But "I'm tired" doesn't begin to describe it. Have you ever had the flu? You know the bone crushing fatigue that makes you miserable, that is what I feel most of the time. On days when things are looking up, I feel more like just after the flu, and days like today, I feel like full-blown so sick you can't stand it tired. My body feels like it is being crushed by a lead weight that holds me down. Each movement is difficult, and takes strength of will to complete. I don't know that I ever knew what normal energy levels felt like, but I know this is wrong. It is not as simple as "tired" it is more like soul sucking exhaustion. So when I complain about being tired, forgive me for whining, because it is either that or give up entirely and not get out of bed at all. Oh and don't make fun of the pajamas!