135 days and counting

It’s been 135 days since I last wrote a blog post. Some days I’ve had a lot to say, others nothing at all. And, for some reason, I didn’t feel like I could come back to writing without offering an explanation for my absence – even though I don’t owe that to anyone. I didn’t feel like I could just jump back in with a post about how RA has affected my body image, and, at times, disordered eating even though I’ve been working on it off and on since last July. This is my 5th attempt at writing since surgery, and I still don’t know what I want to say. So much has happened. Medically, personally, politically even.

On a call with a colleague earlier, I was waxing poetic about my love of numbers and data, and how last night I found myself down the rabbit hole of complex statistical modeling so that I could demonstrate to people that while my disease is rare, my story is not as it relates to pre-existing conditions, access to affordable insurance, and the repeal of the ACA. I live in the data. I live in the numbers.

So let’s look at the numbers – in the last 135 days since I’ve written here’s what I’ve been dealing with:

  • 4 Orencia infusions
  • 2 urgent care visits
  • 1 wrist surgery
  • 3 appointments with 3 different surgeons
  • 2 dermatology appointments
  • 1 MRI
  • 1 chest x-ray
  • 1 rheumatology appointment
  • 1 infectious disease consult
  • 1 “normal” primary care visit
  • 1 cardiology appointment
  • 6.5 hours on the phone with Cigna
  • $1,000+ dollars spent on out of pocket expenses (in addition to insurance premiums)

I wouldn’t call these numbers staggering, but they are overwhelming. This is a lot. It’s always a lot. It’s overwhelming, and there are times I still can’t escape the feeling that I’m drowning.

Lately that feeling has only intensified with the imminent repeal of the ACA – all of these appointments, all of these treatments, all of these hours and dollars spent, and my hold on good health is tenuous at best. Three of the more than six hours I spent on the phone with Cigna were getting the specialty pharmacy to ship my Orencia for my last infusion. Even if the ACA isn’t repealed, I’m pretty sure I won’t have access to Orencia that much longer as Cigna moves to exclude it from its coverage. My insurance premiums won’t go down mind you, but my coverage (and health) will be greatly diminished.

Over the last few months, people have told me repeatedly that “I can’t worry about things that haven’t happened yet.” But they are happening. Things have been set in motion, and all I can do is wait. It’s hard to move past this thought every day. For now, life is standing still, and with the repeal of the ACA, life moves backwards for me and some of the people I care about most.

So it’s hard to write. It’s hard to write, because I don’t know what to say anymore. It’s hard to write because there are people that claim to care about me, that claim to be inspired by me, that still support the repeal of the ACA. They don’t have the courage to say it to me directly, but they’ve made it known with their votes and with their inaction in recent days. I don’t think I’m supposed to take it personally, but how can I not?

It’s hard to write about anything else other than trying to make my case in new and compelling ways every day. To resist digging into the data and the numbers to find irrefutable stats to support what I already know to be true – that I’m not rare, that I’m not an outlier, that there are tens of millions of people just like me that are at risk. To try to find the words to make others to care about more than just themselves. To make them understand the economics of the situation on a macro level.

So I don’t write. I train. Here’s another number: I’ve spent more than 100 hours in the gym since my last post. Some people have told me that I’m withdrawn. I’m not. I’m being selfish. I’m putting myself before the cause. People in my life aren’t used to this, so they think I’m withdrawn. I’m not. I’m processing. I’m grieving. I’m preparing. I’m steeling myself for the fight ahead.

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2 thoughts on “135 days and counting

  1. Rick Phillips says:

    I think we should blog to suit ourselves first. So, I applaud you for any break that made sense for you. I am just beyond concerned about the repeal of the ACA. If we have a chronic illness it seems to me that it is rational to be upset with the changes that might happen. I think when we hear about the reestablishment of lifetime caps on health care, it is a rational fear.

    Like

  2. Lene says:

    I don’t know what to say. It is such a devastating time to have a chronic illness. Between the game of corporate chicken that the insurance companies are playing with pharmaceutical companies to lower the price of Biologics, and the prospect of repealing the ACA. There are no words… Other than perhaps suggesting that you move north of the border?

    Like

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