Thank You

I'm a little early for the season of being thankful, but I wanted to mark something important: My blog recently hit 10,000 views! 

I didn’t expect that to happen for a long time or maybe ever. It took a long time before I even cracked 1000. I just wanted to say thank you to anyone who has read or commented on this blog. I started this blog in February of this year, and I didn’t know what to expect. One of my life goals is to write a book about the bizarre health adventure I’ve been on the last few years, but this is a daunting goal right now so I thought a blog would be a little more manageable.

Writing has given me something to focus on as the chaos of illness was taking over my life during the last year, and it’s been cathartic and transformative. It's helping me feel productive as I am not able to work. Through this blog, I have been able to connect with people who inspire me, and it has helped me feel like I am part of a community. It’s been a real gift.

The purpose of this blog was not an exercise in narcissism or to unleash my crazy into the digital ether (although it is out there now); my goal was to make sense of this strange ride and then make it useful for others. 

I contemplated abandoning writing this a few times this year as life became overwhelming or when I felt like I was just a prating fool, but I knew I had more to say. I’m thankful I didn’t give up and thankful people have found value in it. I'm working on more posts and even submitting some writing. Wider venues offer opportunities to raise awareness about rare conditions and the often invisible battle of chronic illness.

I figured I would take the plunge and make a Facebook page for the blog, which you can find here.

Thank you for reading, for inspiring me, and for showing me how to be a warrior. Whoever you are and wherever you are, keep up the dream alive and know you aren’t alone in whatever battle you are fighting.

From my couch to yours :)

Absurdities

This blog is an exercise in honesty and exposing the often invisible battles of the chronically ill. This is the truth. I am digging deep into my reserves of perseverance right now and keeping a stranglehold on hope. I am living a life much less vertical these days. I rarely am able to leave the house, so I’m feeling less of a member of the daylight experience. I’m considering only dressing in black and really committing to this vampire lifestyle.

The weight of the world is heavy on my shoulders. There are some intense family issues going on. Not only am I not able to work, doing basic things like showering, preparing meals for myself, driving is getting harder. Leaving the house requires using the wheelchair. I've lost my independence, but I'm working on adjusting to this new normal. I keep thinking “I’m 34 years old. This can’t be it. This won't be it” 

I’m trying to focus on the present because that’s easier. I am living authentically still and learning how to not fight my illness so hard, but it feels sometimes that I have relinquished even the illusion of control over my life to this illness. It will take time to adapt. Luckily, time is what I have right now.

Life is filled with an endless string of absurdities. I like to get lost in the abstraction of it sometimes. One way I’ve learned to cope with all of this is to focus on the nonsensical nature of being, and living with illness turns the absurdity up to eleven. This helps relieve some of the heavy weight off my shoulders if I can laugh about it or see it objectively as a ridiculous charade. 

Here are some recent absurdities: 

  
--- My husband and I have gone to Stanford so many times this year, we’ve joked we should get an apartment in Palo Alto (except we aren’t exorbitantly wealthy enough for that). So I sent a message to my local neurologist to see if she could do one of the tests they asked me to do at Stanford nearby. Instead of giving me a yes or no response, my doctor’s nurse turned a simple communication into an impossible riddle. It was like communicating with the Mad Hatter. I even had my primary doctor intervene to no avail. I asked that question over and over and could not get an answer. So I gave up. I’m making the long trek to Stanford to do the test. Forget it.   

I then tried to make an appointment with that same doctor and I made the dumb mistake of mentioning I may have a new diagnosis to that nurse. The nurse told me “if you have a new diagnosis, you can’t get an appointment without a new referral.” I’ve been seeing this doctor for eight years, and I need a new referral? I've been doing this long enough to know that this not how the referral process works. Ridiculous obstacles and incompetence like this explains why the average time to diagnosis for the chronically ill is six years. 

I was already thinking about breaking up with this doctor, and this sealed the deal. I don’t have the energy to fight obstacles I shouldn’t have to fight and this nurse has been a huge obstacle. When I do finally get a new doctor, I will write a letter explaining how much extra stress that nurse has caused and why I had to move on. I want to tell my doctor “It isn’t you. It isn’t me. It’s your impossible nurse.”

 

  

Finding a new doctor is hard. I'd compare it to dating because the goal is to find a doctor you can be with long-term. You need compatibility and shared goals, so I don’t want to make the wrong choice. Divorcing a doctor is messy, complicated business. We need something like a dating website for patients and doctors. I want to plug in what I’m looking for in a doctor and a website will connect me with a doctor who has similar interests and who has heard of my bizarre conditions. We could talk online and exchange pics and then decide to meet in person. The first question I’ll ask: can your nurse answer basic yes or no questions?

Hey girl, I even know what POTS stands for

 ---I'm having a hard time getting around my house, even with my cane sometimes. If we have the ingenuity to identify the Higgs boson particle, I think we could start creating teleportation technology. That would make getting around easier. Imagine what it could do for traffic congestion.

--- I mentioned in my last post that I am going to Stanford next week for another test to perhaps get a confirmation of Myasthenia Gravis. I am not sure what's been more difficult: getting the initial diagnosis for POTS or getting this differential diagnosis. I will hopefully leave that day with some answers and maybe even a diagnosis. My husband and I are preparing for this appointment. If you are young, female, and fabulously ill, I recommend taking someone with you who can confirm the accuracy of your explanation of symptoms. I’m using a wheelchair, having difficulty talking and breathing at the same time (totally overrated anyways), and working hard to maintain enough functionality to not be constantly bed-ridden, but I have still been met with skepticism. I have only seen this doctor twice in two years, so I’m trying not to take it personally. 

When I saw this doctor in May, I was in really bad shape. I was in my second leave of absence that semester. I missed the end of the semester and didn’t get to say goodbye to my students. I was bed-ridden most of the time and devastated that I could not succeed at life let alone succeed at my dream job. I left there thinking it was a good appointment. A few weeks later, I read his notes and at the end he wrote “patient needs a more positive outlook.” Absurd. I’ll never forget those words because they undermined how hard I work every day to maintain my health and hold onto hope.

I’m not worried about the test; I’m worried about what my doctor will say and whether I’ll be able to keep it together. I have learned the hard way: there’s no crying in baseball and there’s no crying in appointments. Keep it together because any emotional response could lead to invalidation. All I want is to leave there with some answers. After all this time, I just want something tangible I can hold onto that explains this chaos.

If it really is Myasthenia Gravis, another very rare illness, I should probably start playing the lottery if I'm this good at ridiculous odds.

--- Halloween was just a few days ago, but I’m probably going to get my Christmas tree up this week. Surrounding myself in glitter and twinkly lights makes everything better. I like to celebrate glitter year-round. I don’t think that’s absurd at all.

 

I hope you have a tactic you use to navigate life’s struggles. Stepping back from the madness of life to appreciate the absurdity of it all gets me through sometimes.

Why Getting a Diagnosis Matters

I’ve been thinking a lot about why getting a diagnosis matters lately. Because many with Dysautonomia or other rarely diagnosed and invisible illnesses must go through months to years of appointments and testing to get a diagnosis, I have often wondered why we fight for one despite the constant obstacles and hurdles to obtain it. For many illnesses, especially rare and complicated ones, time to diagnosis is typically six years or more.

In 2011, I spent a year going through endless appointments and testing before I finally got diagnosed with POTS. I’ve spent most of the time since then going through endless appointments and testing to figure out what else is going wrong. Comorbities are common for Dysautonomia patients and they can spend years trying to obtain differential diagnoses. Never expect life to be easy, that's for sure!

I’ve mentioned before that about a year and a half ago I suddenly started having difficulty walking. I’ve gone from using a cane, to a walker, to now having to use my wheelchair if I leave house in that short amount of time. I am rarely able to leave the house at this point. Leaving the house is overrated anyway. Except, I miss it.

When I mentioned my walking issue to my doctor’s nurse practitioner when it started she basically told me I was imagining it. Invalidation all over again. So I tried to believe that for many months. But then I couldn’t get around and had to get a cane. I was continuing to lose my mobility rapidly. Hey, every 30 something goes through that difficult period of trying to figure out life while losing their mobility, right? Well, maybe not. I wasn't imagining this.

Having just one random illness no one has heard of is not a thing

I finally saw my neurologist this year. It had been two years between visits (the dude is popular and busy), and I told him what I was experiencing along with other disabling symptoms, he gave me a list of tests I would need to do. My heart sank. He was taking me more seriously but I knew all of those tests and appointments meant there would be no answers for at least another year. That was over seven months ago. I have only gotten progressively worse since then. My couch has a permanent Stefani shaped dent in it. 

While I fought to get the POTS diagnosis, I never dreamed of giving up. I'm in my fourth year of seeking a more complete diagnosis. The drive to give up has been surfacing from my subconscious, but that's not in my nature.

In one of the blood tests, I tested positive for an antibody for Myasthenia Gravis. Loss of mobility, weakness, difficulty breathing, and fatigue are signs of this autoimmune condition. In two weeks I do another test for MG. Maybe a diagnosis? My doctor had me start a medication last week that is used to treat this illness. But still, no official diagnosis. After all this time, will I finally know? But this led me to question why does a diagnosis matter? I am technically already being treated for this and have been learning how to cope with it, so why does the label matter?

Not many people want to be pigeon-holed and labeled. When you are desperately ill, that label is a like a trophy, engraved with the words "I Was Right!" Some never get a complete diagnosis and must suffer the costs of uncertainty long-term, but many of these patients still search for a label for their suffering. A label of an official diagnosis can matter for many reasons.

   Official Recognition and Documentation

Insurance companies and the medical system seem to operate in a very black and white world although there are some of us who live permanently in the grey area in between. There is nothing cut and dry about rare, complex conditions. Yet, a label and diagnosis fits into that tiny square in many medical forms titled “medical conditions" (good luck fitting more than one condition in that square). Having to list a grab bag of symptoms doesn’t seem to hold much weight in their world. Sometimes a grab bag of symptoms leads doctors or medical professionals to instead give a patient a psychiatric label such as “depressed” or “anxiety.” It’s easier than admitting they don’t know sometimes or investigating further. The irony is that depression and anxiety often are an effect of disabling symptoms met with invalidation, not the cause.

This is unfortunately incredibly common for many Dysautonomia patients. There can be serious ramifications from this invalidation. A lack of diagnosis could lead to patients not getting approved for a needed test or treatment option. It could mean a patient cannot get needed accommodations at work. It could impede accessibility to essential services for the chronically ill and disabled.

For those who are so disabled that they are unable to go to work or attend school, an official diagnosis could be a life line. This could help them qualify for disability or other types of assistance. For many, a diagnosis is essential for these practical concerns.

Often when you are chronically ill, you will encounter many doctors who do not know your medical history, you will have to fill out stacks of paperwork, and you will need to communicate to the medically uninitiated (such as employers, family members, etc) your needs. A diagnosis provides a concise explanation. 

Truth really is stranger than fiction. You can't make this stuff up. There’s nothing quite like having an entire Wikipedia page dedicated to your rare condition that you can direct them to when you have a diagnosis. The label leads to vital information and resources. It provides you with a prognosis and information to understand your body. A grab bag of symptoms rarely does. That leads to fruitless internet searches and typing into Google "am I dying?" The label can matter.

 

     Validation (Hey, I’m not just crazy!)

Finally leaving the inhospitable world of uncertainty behind for the more ordered, life-affirming nirvana of diagnosis gives patients validation, especially if they have been told they are wrong by many doctors. It lets patients at least take a break from the endless hamster wheel of diagnosis. This has practical financial, legal, and bureaucratic concerns as I mentioned above, but it also assuages the psyche of those who are desperately ill but have been denied proper care and treatment under the label of mental illness.

When I was finally diagnosed with POTS, I wanted to sing in the streets. Then I wanted to send the primary doctor I had who told me over and over “you’re just stressed” and ended up making me worse a flaming bag of dog poop. Ok, I won’t do that but I still think about it.

After being told by so many doctors that I was wrong, I was finally right. When you get a diagnosis, it's like reading a prequel to your life. The plot holes, disjointed timelines, and weird flashbacks of your story start to make sense.  I have learned that sometimes you will still encounter invalidation and continue to have to “prove” you are ill, yet you can wield a clinical diagnosis like a weapon against these forces. You aren’t wrong. You have proof. The label can matter. 

     Treatment

Perhaps most importantly, a diagnosis can lead to treatment options where there were none before. As with most rare conditions, no specific drug has been created to treat Dysautonomia and POTS as a whole, but there are drugs that treat symptoms such as Midodrine. Drugs are typically used off-label for Dysautonomia and POTS, such as Florinef (which was created for Addison’s Disease). The FDA did recently approve Droxidopa, an Orthostatic Hypotension drug.

It is difficult to treat a patient without a specific diagnosis, so finally getting that label gives a patient some options as opposed to few or none. Even with a probable diagnosis, you can have treatment options. For example, since my doctor suspects Myasthenia Gravis, I have started taking Mestonin and started physical therapy. Proper treatment can provide hope and can lead to a better quality of life. The label can matter.

 

 ***

HuffingtonPost posted an article listing other, innovative avenues for patients with complex conditions to pursue when you are trapped on the hamster wheel of diagnosis. POTS is even mentioned in the article, how about that! Depending on what happens over the next few months, I may pursue #3. 

I have been telling myself over the past year that perhaps a diagnosis doesn’t matter, but that’s the drive to give up talking. It does matter. The process to get there is painstaking to say the least but I have written before that there are ways to navigate it, which is here. 

Even if I also become one of those who must suffer a label-less existence, I know I'm not wrong, and that's what matters the most.

My last trip to Stanford Hospital. Keeping up the good fight

Why does getting a diagnosis matter or not matter to you?

Celebrations

So it is my 34^th birthday today....a very sassy 34

My birthday is a weird time of year since I got ill. POTS entered my life in 2011 and things started to go rapidly downhill for me around my birthday that year. I was still pushing through the PhD program and everything hit critical mass that fall. By October, I was fighting so hard to pretend everything was ok.

By the time my birthday hit, the gig was up. I left the PhD program on November 2^nd 2011 and life looked crushingly uncertain. It’s three years later and I am in the exact same place, at rock-bottom and gazing wearily once again at a very uncertain future.

So yea, my birthday is always a strange time. I am constantly measuring time and illness—thinking “this time last year I was better. I was able to do this and that.” Last year, we had a party at our house because my BFF and I celebrate our birthdays together since they are so close. We had a good time and danced a little. I had finished my first evaluation as a full time professor and did so successfully despite being putting on a brave face while ill. I felt badass and accomplished. I inhaled some decadent chocolate cake in celebration.

This year is completely different. I'm not working. My new office I prepared during the summer is sitting empty. There is no dancing. Instead, I spend my days asking myself “Can I safely drive, shower, prepare a meal?” "Am I able to walk to my kitchen?" I sit on my couch or lie in bed and ruminate on life, surrendering to this opportunity to recover an authentic self. 

My goal was to just show up and be present for my birthday gathering this year. I did have to lie on my friend’s bed through part of it, but I showed up and had a good time. I missed everyone else's birthday this year but made it to my own at least. We sat around and talked about the absurd things we always talk about. It was glorious.

I’m trying to remember that measuring is not living. Pretending is not living. 

My circumstances may be similar to three years ago but my outlook is changing for the better. Although this year has been an endless roller coaster of struggle, I’m working on bringing joy back into my life, which has been absent for years now. Climbing the academic career ladder and fighting a devastating illness blinded me from the things I used to love. When your body is just holding onto mere survival, there isn’t much room for anything else. But I am trying to re-discover the things I left behind.

I’m working on celebrating life and finding small pieces of joy in it by reclaiming my creative spirit.

Like music. I finally finished some songs I’ve been writing for years now and even got one recorded this summer. Music has been my guiding light for most of my life. I may have degrees in literature, but music is more important to me than any piece of literature. I desperately miss performing, but I still play and sing almost every day when I am able. I used to play in restaurants, bars, and weddings, and I took being able to perform for granted. Now, when I get the chance I really savor it. My dream is to record an album of all originals. It’s my number one life goal, and it will happen.

You can hear the recording of "Upright," which I wrote as a reminder to myself of my strength despite my limitations. 

I am listening to my records again. I have been listening to vinyl for the last 15 years, before it got cool again (I am such a freaking hipster). I’ve dragged this collection over state lines multiple times. I’m rediscovering records I haven’t listened to in years.

A few of my favorite things: vinyl records, Harry Potter, twinkly lights

I’m drawing and painting a little again. Just a little. 

I studied American literature, but since I left school all I’ve been reading is fantasy literature. I am reveling in reading whatever I want. When your body refuses to let you move, reading can be transportation.

One benefit of being ill (there are a few) is being forced to be still. I’m a workaholic, so this is anathema to my nature. My brain used to be constantly in motion preparing for what was next and what else I could achieve. But now that I’m regularly bed/couch-ridden, I must lie still and just exist in space. I remember the flavor of life and the pulse of community.  I am given time to reflect—to be truly tethered to the present. This has been transformative. I crave the things I genuinely love, relinquishing the trappings of adulthood that can blunt so many of our real desires.

It’s an opportunity to peel away the layers of self we build to present to the world to instead find a truer self, one that has been lost in the saturation of daily life. It’s been a chance to say I survived going over the edge of the cliff, a chance to observe with clarity and then ask myself, “What do I really want? What meaning can I make from this experience?” 

This sounds hokey, but it’s a reality I’m living. It’s brutal and harsh but beautiful and worthy of celebration as well.

I was a writer before I was anything else. I came to music as a writer. I became an English major because I’ve loved writing and pursued an academic career on the strengths of my writing. Starting this blog and writing again feels like a rebirth and celebration of what I still have and what I have learned. It is the gravity that pulls all the random pieces to make them unexpectedly fit together.

Even in the darkest of times, there can be an opportunity for celebration. Today I celebrate what I have overcome and what I’ve endured. I celebrate who I am, those I love, and all that life gives and takes from us that is truly worthwhile.

The even-numbered years seem to have a better track record for me. I'm letting go of the things that don't matter. I'm bringing the sass. Let's do this 34 

I even ventured outside briefly today. The demon in the background appreciates the sass