Tuesday, November 4, 2014


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.


  1. "Any emotional response could lead to invalidation."

    This makes me so angry I can't see straight. It's so true.

    Here's to being broken and fabulous. <3


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