Presence and Absence

Someday I want to talk about other topics like what helps or the interesting research happening with POTS right now but I am still in the middle of the longest rough patch I’ve ever had: two and a half months. This is a place for honesty and this is what I’m living right now. This isn’t bitching. This is what unbridled frustration looks like. I spent last weekend bed-ridden again with horrific GI problems, failure to be upright, and probably should have gone to the ER, again. I called my husband in a panic and told him to come home from work so we could go to the ER. Instead, I drank two bottles of Pedialyte and managed to stay conscious. I have called my doctors because this is not a fluke. I’m ready for this pattern to be over with. Absolutely done with it. I’ve lost 8 lbs. since January and it’s gross. I know I need to be a little more vigilant about my health and make some better choices, but damn that’s hard. I even stopped eating chocolate. My beloved chocolate! I have switched to a stricter diet and I’m taking (drinking) the medicine my GI dr gave me every day even though I hate it. I’m going to get some control back in my life because POTS/dysautonomia has been controlling me every day these last two months. I’m the boss. I make the rules. I’m getting this thing back on track. I refuse to let this become a new normal. I have some appointments coming up and may try a new medication (maybe). I just hope I can communicate what I’m going through—not be a weepy mess—when I talk to my doctors.

I missed another event last weekend. I think I am averaging going to 15% of the events I have been invited to this last year. It makes me desperately sad. I have always tried to be a reliable person in my personal and professional life but I am no longer reliable. I can’t rely on what my body will do even as I write this. It’s pure chaos. 
 

I’m trying to maintain some perspective that I don’t think most people would be doing what I do every day and going to work dealing with this chaos. I say this with confidence because I’ve spent years training as a chronically ill warrior. I have the battle scars to show I have earned this level of perseverance. I also don’t think my students or anyone I work with would realize how much I am struggling. They would probably just say I look exhausted. Perspective. I have a lot of ranks in looking like I am keeping it together. Someday I want to create a line of makeup for the chronically ill called Perpetually Exhausted. Makeup is sometimes war paint to leave the house and face the world.

Absence. Calling in sick to work. Missing events. The vacant staring from my couch while Harry Potter plays in the background. Absence. But I’m here. I’m here. I just hope that my absence doesn’t imply disengagement or disinterest. I hope no one assumes my absence is purposeful or intentional or that my absence will just be assumed. The view from chronic illness is that so much life is happening around you but you feel like only a small part of it. Time is ticking by and everyone is making plans, building a life, going out into the world. Sometimes I’m motionless as the world is spinning around me. But I am here. I am always here and I am reclaiming the energy for real, actual physical presence. I am coming back to the land of the living. I have the best friends and family. The most amazing husband anyone could dream of. I'll get back to enjoying life with them again. Experiencing and feeling the good times just as intensely as the bad. I’m here.

Musings: Presence and Absence

A particle, a being, a memory, a simple flesh. Conceived in the dust of stars and orchestral supernova. Tapped into the eternal center, a pulsing energy swirling in galaxies that coalesced in the magic of life. To utter these words, to walk a few steps, breathe once in this blink of a memory in the endless motion of time. Smallness in grandeur in the inescapable beauty of movement. The mercy of perpetuity. The cosmic exhale. The gravity to behold

Compression Stockings: Bringing Sexy Back

So one of the first suggestions you'll hear from doctors to treat POTS and dysautonomia is to try compression stockings. I bought some knee high stockings right away but they were uncomfortable and didn't work. They now live at the bottom of my sock drawer. I'm going to actually give thigh high stockings a try. It's the next frontier. I've been wary because it is obscenely hot about 10 months out of the year where I live and wearing tights under pants in 90 degree weather could make me spin into an anger rage spiral really fast, but I wore some spanx to a wedding a few months ago and got a taste of what compression stockings could feel like, while working it in my vintage-inspired dress. It felt a little like I had super powers because I didn't feel the tentacles of gravity constantly pulling me to earth as much. Blood pooling in the legs is the hallmark of the condition and the reason why I spend as little time vertical as possible; compression stockings might be worth a try. My legs are becoming more and more swollen, partly because of the medications I’m on and partly because most of my blood resides there. I look at my thighs these days and feel like some sort of slightly underweight, malformed Stay Puft Marshmallow Man. Lovely image, right? I never realized  how expensive compression stockings are so my wallet just took a good punch, but if they work, I might be able to convince my insurance to cover them. When the stockings arrive, I’ll post about whether they helped or not. Bring on the sexy.

Stamina

I said the next post would outline what helps, but I have had something else on my mind for some time now. I’ve been having some dark thoughts lately and struggling to keep my death grip on hope. When this deal started in 2011 and I had to leave school, I thought I would go to some appointments, get a handle on whatever was happening, get some rest, and get on with my life. Instead I went to many many appointments and battled to find doctors who would believe me. I thought when I got the diagnosis and a medication regimen that I could move into the maintenance stage and get back to living. That hasn’t happened yet. Then I started having trouble walking and they told me it is unrelated to my condition. It’s something else. Something else to diagnose, test, and define. My heart sank. I thought about all the time and energy I had spent to get to where I was and that I was going to have to start over. Three years straight of appointments and tests, and now that I’m working I have to figure out how to manage my health and do these appointments. Can’t I take a vacation and have some normalcy? Just go to work like normal people and not have to ask myself  every single day “Am I going to make it today?” I have to accept that the chaos has become my normal. 

 

I had an appointment at Stanford this week and I cancelled it. I keep thinking “What is this all for? What am I getting out this? Am I going to have to do this forever?” I know there are more tests on the horizon, more medication changes, more trying to figure out how to do all of that while working and maintaining a semblance of a life. I am stubborn and determined to an absolute fault. The first two years of this thing I went to all of those appointments and fought hard to rebuild my life without question, but I feel that fight fading right now. This isn’t me. This is not who I am. I am a fighter to the core. How do I keep up the stamina to keep doing this?

I can imagine a better life where my symptoms are managed, where I’m not going to constant appointments, where I'm not missing work because I’m ill, and I have a life with hobbies and passion again. I can see it and I will keep fighting for it. My stamina is waning but I have the muscle memory of courage and perseverance to rely on. I can press on. The fight will come back. I know it will. 

I’m going to share some of the writing I’ve been doing for myself the last few years. Here’s a poem I wrote about the very first test I did in September 2011 before I was officially diagnosed. It was an echocardiogram. It was the first time I had to intimately experience the fragility of my own body and life, an intimacy you have to learn to get comfortable with in the battle with chronic illness.

Echocardiogram

She said lie still, pressing sound waves into my chest

Wrapped in linen, I saw the open of my heart

Bouncing, auditory unrest and electricity

Black and white fabric of innervation

I stared into the Gorgon of mortality

Oh—that’s all?

I could bite it. Rip the skin. Tear the flesh

Taste finality in song

Unfurl this skin and find the final gate

Heard the swirling of blood, the violence of life

I looked inside

And gaped with savagery. It was unknown to me. A figurative lesson no more.

I saw the open of my heart and wanted to crawl inside

My essence—like coming home

The Past, The Present, and What the Hell is Dysautonomia?

Last weekend, I was at my parent’s house not watching the super bowl, and my mom brought out a pile of pictures she was going through. She handed me a picture that gave me a punch in the gut. This is a picture from when my parents took my husband, my sister, and I to Hawai’i a few years ago:

I looked at this picture in shock and not recognizing this pre-sick version of myself. It made me sad. I showed it to my husband and it made him sad too. I don’t accept wallowing, but I do have moments of “whose reality am I living in because this isn’t mine.” Like stepping through the looking glass or that horrific awakening after being disconnected from the Matrix. This picture is like looking at memories from that sleek, spectacular world where everyone wears pleather and badass sunglasses while dodging bullets. Pre-sick is a stunning alternate universe. Looking at this picture was another “WTF happened to my life” moment. It does not do to dwell on the past, so I had that sad moment and then moved on. I laughed and told my husband “I looked so weird and fleshy then.” And damn, I miss that hair. 

What It Is:

This is the present. I was diagnosed with dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome) in May 2012 when I did my first Tilt Table Test. Dysautonomia and POTS are very rare conditions and are very rarely diagnosed.  It’s estimated that 500,000 people are diagnosed with POTS. There is no pamphlet or brochure for this condition and most of the doctors and specialists out there have never heard of it. There are no specific medications for dysautonomia. Many with the condition will hear from doctors that your symptoms are "all in your head." It's an almost universal experience. This is why it took me over a year to get diagnosed. It’s been almost 3 years and I’m still trying to get a more complete diagnosis. Once you get a diagnosis, a cardiologist and a neurologist are the first lines of defense in the battle.

I am no medical professional (though I would argue I may deserve an honorary medical degree at some point), but as far as I know a Tilt Table Test (TTT) is the only way to get a definitive diagnosis for POTS. The test sounds simple: you are strapped to a table while lying horizontally. Your blood pressure and heart rate are monitored continually and they lift you slowly up to vertical while still strapped to the table. My heart rate immediately increased almost 80 beats. 72 at horizontal to 145 at vertical. It was unpleasant. If your heart rate increases by 30 beats, you have a definitive diagnosis of POTS. I was earning extra credit with the 80 beats. POTS is subset of dysautonomia, which means a dysfunction of the Autonomic Nervous System. Not everyone with dysautonomia has POTS. There are a variety of subsets. Dysautonomia is is referred to as an "umbrella term." It is important to find out which subset you have to get more focused treatment.

The ANS controls all of the functions your body preforms automatically: breathing, heart rate, blood pressure, digestion, body temperature, sweating, etc. "Autonomic Dysfunction" means the body is no longer able to self-regulate these functions. Normally, when you stand your body is able to adapt to gravity and maintain blood flow to your essential organs. The words “postural orthostatic” and “tachycardia” mean that upon standing the blood pools in the legs, your blood pressure drops, and your body goes into overdrive to maintain blood flow to your brain. This is why fainting (syncope) is often associated with dysautonomia and POTS. This condition can be result of nerve damage so the nerves (your direct line of communication in the body)  are no longer working as the connection between the brain and the body. It’s like the body just suddenly forgot how to be a body (you had ONE job!). I explain to people that it’s like my “wi fi” was turned off and I swear I paid my internet bill. 

Symptoms typically related to dysautonomia include dizzinesss, excessive fatigue, GI problems (including gastroparesis and dumping syndrome), blood pooling, syncope, brain fog, difficulty sweating and maintaining body temperature regulation, tachycardia, bladder problems, hypovolemia, etc. Symptoms manifest uniquely for each individual, which makes diagnosis that much more challenging. 

Dysautonomia is not a disease; it is a symptom and a condition. The real struggle is not getting the diagnosis. It’s finding the cause. The Elusive Cause is more difficult to track down than Sasquatch and for most people The Cause is never confirmed. My doctor at Stanford believes The Cause for me is likely a conglomeration of genetic predisposition, multiple neck injuries (in gymnastics and a car accident), and other factors. The Cause is still elusive for me because my doctors couldn’t tell me why I had sudden onset of the condition. Most of the time people acquire dysautonomia after a major illness, often a viral illness. Recent research shows that dysautonomia also has an autoimmune component. It seems most dysautomoniacs (if not all) have a variety of other illnesses and conditions. As one of my doctors said to me with much appreciated empathy “Some people are just lucky.” Dysautonomia is incredibly unique for each individual and presents differently. It can be severely disabling to the point that some are unable to work. I was unable to work the first year and I work now but with varying levels of success.

There are very few physicians who have heard about this condition and only a handful in the world who are experts on the subject. If you get a diagnosis, I recommend seeking one of these individuals out at a specialty, research hospital. That was the best thing I ever did. I am now treated by an expert at Stanford University. There is autonomic testing which can help narrow a diagnosis but only a few places in the US that I am aware of have the facilities to perform these tests. Many of these tests were created at the Mayo Clinic. I’ve heard that’s one of the best places to go for autonomic dysfunction. 

There are no replacement surgeries for the nervous system. It can’t be grown on a rat and transplanted into your body. You’re stuck with that lemon. And here’s the kicker: there is no cure either. The only option at this point for dysautonomiacs is treatment of symptoms. But there is hope. Sometimes the condition improves on its own and sometimes it doesn’t. There is medication used off-label to treat dysautonomia/POTS and there are non-pharmaceutical options (my favorite kind) to manage the symptoms as well. Treatment for dysautonomia often involves medication that raises blood pressure such as Midodrine or Florinef, an increase in salt intake, exercise to build strength and avoid deconditioning, and other medications to manage the wide range of symptoms patients have related to the condition. I take a calcium channel blocker (Verapamil) to lower my heart rate, Florinef to help my body hold on to salt and raise my blood pressure, and salt pills. It seems that more people and medical professionals are becoming aware of this condition. 

There are a few great websites that explain POTS and dysautonomia that are indispensable to understanding the condition and finding treatment:

Dinet.org

The Wikipedia page on POTS

Dysautonomia International 

Mayo Clinic's page on autonomic neuropathy

The most important thing to remember is that there is hope and dysautonomia may be part your life but it cannot take away your humanity, your values, and your spirit. There are resources to manage the condition so that you can live the best life possible. 

Arming yourself with information is essential in the battle because you will often have to be the expert when talking to doctors, and taking ownership of your health is imperative. I stepped through the looking glass, but I came out the other side a warrior.