Month: January 2024

We have been back from the west coast for a week and I feel like…something bad. That is how badly I am feeling. I have lost my metaphorical skills. At least temporarily.

Seriously, the nerve pain that the cymbalta is supposed to be managing is back, and has been plaguing me for days now. This could be blowback from the travel or it could be a random flare. Doesn’t actually matter because either way, it is disrupting my sleep.

I have a call into my doctor (the new, more responsive GI) and am waiting to hear back. My guess/hope is that we change anti-depressants and the magic starts working again. And hopefully soon , because my tube is scheduled for replacing on Friday.

I know I have been particularly quiet lately. Part of that is the impact of travel on me. We went to the West Coast for a week and that wiped me out for the following week too.

Then things were nice and quiet so I started increasing my feed. This involves anywhere from 2-3 days when I am in pain and out of it, followed by a day or two of feeling ok before starting the process all over again. But it is paying off. I am now at 38 mls per hour.

As a reminder, the highest I have ever been was 54ml per hour and that was nearly 7 months ago. And it was not my goal nutrition rate. It was just as far as I had gotten in my upward titration.

In fact, my GI doesn’t even know what my target rate is because I have just never reached it. The target she ultimately chooses in consultation with her nutritionist will include allowing me to drop down from feeding 20 hours a day to feeding 18 hours a day. Which my jejunum will appreciate. But I probably won’t learn that number until I see her next given the speed at which I am going.

Speaking of my GI, Etisarap is getting a new look. On February 2nd, I am getting my tube replaced with one that will need regular changes every 4-6 months. My current iteration will reach a year in February and that is its general lifespan.

Going forward, with this new style of tube, my tube changes will be able to be done without anesthesia by the interventional radiation department. Nope, I didn’t know such a thing existed either. And yes, I am damn grateful that I have Mary to navigate how to get those swaps done.

In other news, we went to visit my in-laws in Boston over Christmas where we tested my limits and, well, wiped me out for the following week. Next week, we are heading off to the Bay Area to see family and friends. But we are getting to be more strategic and extended the trip to give me some recovery time in the middle. We will see how that works out.

My brain is ever-so-slowly beginning to catch up with the additional nutrition, but instead of doing something useful like allowing me read or knit, I am just getting emotional waterfalls that I am not yet equipped to deal with. So I have periodic meltdowns about things over which I have no control. Not the funnest way to spend an afternoon.

That is the short and the sweet of it. I am planning/hoping to start posting more regularly again, even if they are just short posts. But I know that will be a struggle even as I write this. Travel just truly takes it out of me. You probably won’t hear much out of me until I have recovered from the Bay Area trip, but I will try.