Relativity

This week I had an edifying conversation with someone who was on Total Parenteral Nutrition (TPN) for 19 years. TPN is a level up from enteral nutrition (what I do) because it bypasses the digestive system completely through IV feeding. This method has a much higher risk of dangerous complications due to infections and can cause kidney damage. But it can also be a literal lifesaver.

She does not have gastroparesis and has been able to eat normally, for the most part, for over a decade. She offered to answer whatever questions I may have and share her experience with me. I found her experience to be incredibly helpful in understanding the void of information that I have encountered.

Back in the day, when she first got set up with TPN, the supply company provided a team of nurses to support her. She had a number to call if she had any questions and if necessary, a nurse would come to her house to take care of whatever was the issue. If a doctor needed to be involved, the nurses spoke directly with the doctors and implemented whatever the orders were.

In the ensuing 30+ years, those nursing positions were cut and are now virtually gone. A major supplier just laid off almost all of their TPN nursing staff. Enteral feeding is much less dangerous, so it make sense that those positions were cut long ago. My supplier closed their only physical location in NYC during the pandemic.

Not only did those nurses lose their jobs, but their roles simply fell through the cracks. But no one on the educational side of the equation changed their content or training methods. It once made sense to have doctors only focus on what fell squarely within their domains. Like learning to just put in a tube without learning about stoma care. That is no longer the case.

This week someone in my gastroparesis tubie group badly burned her skin because her doctor gave her silver nitrate to burn off her granular tissue (a normal part of having a stoma) and told her to watch YouTube videos to learn how to apply it. After she watched the videos, she remained confused and called her doctor for assistance. Her doctor gave her some more YouTube links. She did her best and now the skin around her stoma is a greyish/black (I know because she shared photos that were really very gross–but she put them in a comment so I actually chose to look at them) and she can’t get in to see her doctor for 3 weeks.

Hopefully, by now you know that this kind of responsibility hot potato is an issue for me too. But, I also now have just the tiniest taste of what used to be now that I have added a stoma nurse to my team. My poor, abused stoma is still healing from… everything. Last week my stoma nurse gave me some instructions that I followed to the letter. This morning I looked at my stoma and it was a bloody mess. I was sure that I had done something horribly wrong. I texted her pictures and a plea for help.

In return, I got an encouraging and helpful text explaining that this is actually what healing looks like. She told me exactly what products to buy and gave me some follow up instructions. I immediately felt calmer and ordered everything I needed from the Behemoth of Seattle.

During our conversation, I told my friend about how those both on TPN and enteral feeding are now left completely on our own. She was, unsurprisingly, appalled. She also immediately understood just how much more traumatizing it is now to become a tubie. She knows exactly how confusing and terrifying adjusting to life as a tubie is. But she was fully supported and didn’t have to expend anywhere near the energy to get her questions answered or the care she needed. She was able to use that energy to raise her kids and go back to work rather than an endless cycle of phone calls without answers.

I haven’t even gotten to the most fundamental take away from our conversation. Perspective. I have been told repeatedly that once I get to stable nutrition, I will get back my “me-ness.” But no one has gotten specific on how long that should take. I know I am not fully back yet, but what I didn’t know whether or not this is where my new normal is. After all, I have had stable nutrition for weeks now. Well, except for those 4 days with no nutrition after the month of hell. But time passes so slowly to me that even though that was only 3 weeks ago, it feels like a year to me. And in that “year” why was I not feeling better?

Having been through a similar 2 years of starvation before getting her TPN, my friend reassured me that what I am experiencing now is just the tiniest taste of what is to come. My body has been malnourished for years. How could it possibly recover from that in a matter of just a couple of months? She reassured me from the other side of this recovery that it will happen. But it will take much, much longer. Maybe even a full year.

I am much too impatient to wait for a year to get back to myself when just a few weeks feels like a year to me. But this one is not up to me. My poor body has been through the ringer and I owe it to myself to give it the time and space it needs to fully heal. The most important thing I need to keep reminding myself is that I will not feel this way forever, even if it feels like it. I will continue to heal, albeit slowly, as time marches on. All I ask is that you all continue to be patient with my recovery.

Despite my occasional pessimism, I am making progress. Our elevator is functioning again so yesterday I ran errands with David. We went to the UPS store and picked up an Rx for me. And I walked .7 miles in the process. It did make me tired, but it was the good kind of tired. The kind of tired that makes me want to continue to slowly build my endurance. Emphasis on the slowly, because I am definitely not up to going back out today. Still not the previous kind of tired that would cost me days of recovery.