There is more to fear than fear itself

As my nutrition levels continue to rise, I increasingly have the processing power to really comprehend my new reality. And honestly, it is a an emotionally fraught struggle.

It is impossible to convey just how life-changing being able to feed myself again is to someone who hasn’t been there. I know this because even I struggle to fathom it, and it is my reality. Prayer have never been my thing, but I am filled with so much gratitude for Etisarap (my tube) that I am crafting a blessing for her.

Traditionally Jews say a series of morning blessings upon awakening. They are a series of blessings appreciating of the miracle of waking up. I never truly appreciated them before now. It does feel truly miraculous to me to wake up in the morning knowing that I have a means to feed myself. So much so that I feel a compulsion to express my gratitude.

I mention these overwhelming feelings of gratitude to contextualize the fears and anxieties that are my current struggle.

Enteral feeding comes with a whole lot of dependencies that I am just not comfortable with. My biggest concern? Access to everything I need. I am allergic to soy, which severely limits the number of formulas that I can use. Which is counter-intuitive given that soy is an increasingly common allergen, but that is not what concerns me.

One of the lessons that I believe we can all agree on is that Covid has taught us just how precarious supply chains are. Even before I got sick, I had started weaning myself off my antidepressant with the strongest withdrawal effects because I was concerned that it might one day become difficult to access. This is not an unreasonable concern as anyone on Adderall can tell you. As unpleasant as those withdrawal effects can be, they are nothing compared to starving.

My other concerns are all about our crumbling medical system. David and I have been talking about leaving the US since 2016 and our primary criteria for where to settle have been access to quality health care and the ability to get residency and buy into those health care systems. This seems more important than ever right now.

My formula does not require a prescription, but my feeding supplies do. I confirmed this the hard way when I tried to purchase some bags to vent my stomach. One of the features of a G-J tube like mine is that I can open the port in my stomach to vent out air and stomach contents to make me more comfortable. It makes a huge difference in my comfort. It also makes a pretty significant mess.

The venting bags are no more than a bag with a one way vent preventing the air from re-entering my stomach. But they are inaccessible without a prescription. And even with an Rx, they are $15 a pop. Fortunately, my fellow tubies once again came to my rescue. The urine bags that go at the end of catheters have a one way vent and do not require an Rx. They are also closer to $2 a pop.

Which brings me to money. There are only a few companies that provide enteral feeding supplies. There just isn’t that much demand. And neither of the two biggest ones take Blue Cross Blue Shield anymore. We get our health insurance through the New York State Health Exchange, The timing works out such that we are in the open enrollment period and we can change our insurance starting January 1. My challenge is to find a company that covers my GI, the doctor that inserted and maintains my tube and my supply company. And given how the most support has come from this supply company, I am bound and determine to keep them.

For all of the reasons I have laid out in previous blog posts, we paid out of pocket for my first month of supplies, including Yipbarri (my pump), my formula, my feedbags, two syringes, tape and gauze. It ran over $800. For a single month!

Even with insurance, the 3 plans that meet my minimum criteria only pay 30% or 40% of my supplies and that only after I meet my deductible. At best, that is $6,720/year + the deductible and the monthly premium just to keep me alive. It should not surprise you that I see a constant flow of Go Fund Me’s and people offering leftover supplies in my gastroparesis group. This is not an affordable lifestyle. Especially because it is incredibly difficult for people with gastroparesis to hold a job because of the unpredictability of the disease.

Which leads me to my next emotional struggle. Until now, I could not distinguish whether my discomfort was due to the gastroparesis itself or the fact that I had to force nutrition into my poor stomach. Now I can say with certainty that my gastroparesis continues to be debilitating. Which is all of he more frustrating as I start to have the energy to do things and end up back in bed laid low by raging nausea that refuses to be tamed. I have no way of knowing how I will feel from one day to the next. Although mornings do continue to be the worst.

Yipbarri just alerted me that my feed is done and I need to go disconnect and flush Etisarap, so I will end this here. Still to come. Reconciling to be a non-eater in a world where so much revolves around eating and drinking. Just a reminder that you should feel free to ask me anything about gastroparesis and/or enteral feeding. I have no idea how this reads to someone not in the midst of it, so if you have questions, please don’t hesitate to ask them.