I am in no shape to be writing this update. I am exhausted, in pain and my heart is broken into little bits. But there is news, so I am posting.
Quick update. For anyone who missed it, we came home from the Berskshires to a very sick Dancer, my much beloved cat of 13+ years. He left this world at home, in my arms, Sunday afternoon. He deserves a memorial post, but I am not yet ready to write it. Everything is just too raw right now. Given that we are heading to Lake Placid for a week with the other side of David’s family on Saturday, it may be a while. But he will get the tribute that he deserves once I am feeling up to it.
The Bershires went much better than expected/feared, but since we literally walked into an emergency at home, I have neither processed nor healed from that yet. Possibly more on that another time.
The real update is that I have medical news to share. After some to-ing and fro-ing my Stony Brook GI finally got in touch with my psych nurse practitioner who supervised me going off my psych meds. They have agreed to start me back on 30mg of Cymbalta to see if that works. I took my first dose yesterday.
Amidst the loss, I managed to pull off my 15 hour fast and SIBO test yesterday. David went into Manhattan for me to drop off the completed test. Results will take 5-7 business days. So we settle in to wait for news.
I have an appointment on Thursday with the nutritionist that the traumatizing GI referred me to. This nutritionist has experience with tube feeding, which makes her, in my experience at least, a bit of a unicorn. I am looking forward to having a conversation with someone who gets nutrition, but I am also anxious given the circumstances.
We now have both the original 1.0 and the 1.4 formula at home and I have been supplementing my nutrition orally. Occasionally I get fancy and can drink two servings in a single day and gotten in as many as 300 extra calories in me in a single day! But even the extra 150 makes a difference.
Of course, nothing involving my tube can be easy. When I tried to order my monthly allotment of formula and supplies, my supplier told me that my formula is backordered until the end of September. They offered me the option of ordering the 1.0, which would drop my caloric intake by a third, or get an Rx for another formula.
The problem with many other formulas is that most of them have soy. And with me being allergic to soy, that makes them a poor choice. There are a few formulas without soy, but I don’t know if they have a 1.5 peptide option. Basically, it wouldn’t be an easy switch.
In retrospect, the following is something that I could have had Mary do for me, but I didn’t know that I was about to fall down into a rabbit hole. Hang on folks, this is where it starts to get weird.
I called the formula manufacturer, a company I have been ordering directly from for over a year now, to see if they have any of my formula in stock. When I told my tale of woe, I got transferred to their customer advocacy team. I once again, relayed my tale of woe and, once again, and they said they would call me back.
They did and told me that they had spoken to the sales team who assured them that the next time I ordered my formula, it would be in stock. I explained that that time was now, and I had just been told that they were out of stock until September 25th, which is why I called them in the first place.
They said he would call the sales team again. Shortly thereafter I got a call from the supply company telling me that there had been a miscommunication (although carefully, not an apology) and my order would be shipped tomorrow. I am still kinda holding my breath until I get the shipping notice from my supplier.