Author: evaschweber

Today is a Not Great Day. Yesterday I had a Pretty Good Day. I had had acupuncture the day before and I was able to eat more solid food than I had in a while, albeit still at the cost of drinking formula, because every decision with GP requires a cost/benefit analysis. Good thing I have a MPA and career experience in budgeting.

A recent literature review of the latest research in GP indicated that acupuncture was the only treatment that improved quality of life and didn’t just mitigate symptoms. This has held up in my experience. Unfortunately, that good day may very well be the reason that I am feeling crappy today. But GP is so unpredictable, who knows.

Today I slept until 1pm after going to bed at about 10:45. But, I did take a shower before bed, and I find showers to be exhausting. Needing a lot of sleep is not unusual for me. Granted, I was a champion sleeper before GP, but now I truly cannot function with less that 14-16 hours of sleep. Of course, it is also possible that I absorbed some cat DNA at some point and have just become part cat.

I used to be a morning person (I actually really miss mornings, but given the chance, there are way more things I would get back before mornings). I now use that little burst of morning energy to scoop kitty litter, empty the dish drain, pour myself 2.75 oz of formula, mix up my electrolyte drink that will take me into the evening to finish and give Xena Malka, the most neglected drama queen cat ever, some scratches out of sight of her brothers.

Then I settle on the couch to gently force the formula down my gullet while I catch up on the world. Most days, that is immediately followed by going back to bed. My body does not do well with the first food of the day. I go into a weird shutdown mode where I literally stagger into bed and can do nothing but lay there with my eyes closed for 20 minutes to an hour. I can’t listen to music, a podcast or an audio book. They are just too overwhelming for my system. Fortunately, I usually have Dancer there to keep me company.

Once I get past all that drama, I get to finally start my day. On a Good Day, that can mean going for a walk and wandering the neighborhood. Although, I can’t walk more than 1/2 mile without triggering up to 3 recovery days afterwards. But, one of the many reasons that I love living in Astoria is that there is much to explore even within my tiny radius.

My new hobby is trolling the neighborhood for bakeries. Just because I can’t eat doesn’t mean that I still don’t get excited by delicious baked goods. I can feel like utter crap and spot an interesting looking restaurant and excitedly point it out to David. What can I say, good food excites me even when I can’t eat it.

On a Not Great Day like today, all I have in me is sitting on the couch while I struggle to get 24oz. of electrolyte solution and as much formula as I can manage into me. Which is harder than you might think. Every sip feels like a lead ball being dropped into my stomach, followed by a wave nausea that I can feel all the way up to the back of my throat. Thankfully, I have a Medical Marijuana prescription, and my current strain, “Remo Chemo” does a pretty good job at keeping the nausea down to a dull roar.

On a Good Day, I can spend my day reading. On a Pretty Good Day, I can write this blog post. On a Bad Day, I can watch decent TV or a movie. On a Really Bad Day, I slip back into the sick days of my youth, watching mindless sitcoms. Think Love, American Style or Charlie’s Angels reruns.

Thus is a day in my life. And all done after only ingesting ~between 375 and 500 calories a day.

David and I both expected some degree of medical blowback after our move, but we both hoped that it would be temporary. Two months later, I am sorry to report that it doesn’t seem to be.

Where I am – At this point I am subsisting almost entirely on sole-source nutrition formula, and not very much of that. I also drink 24oz. of high sodium electrolytes to keep my blood pressure up. Turns out starving oneself can really do a number on blood pressure.

Previously, my NYC GI, Dr. Goldstein and I had discussed the future possibilities of an endoscopic injection of botox that would freeze the valve between my stomach and my small intestine in an open position. This is not a fix that has shown much benefit for people with idiopathic Gastroparesis (GP). The next step after that would be a G-POEM, which would cut a muscle in my stomach that would more permanently keep the valve open.

Today, David and I met with Dr. Goldstein to discuss where to go from here. Given where I am and the fact that the Smart Pill test results indicated that the motility in my small intestine is also slow, he doesn’t feel like a G-POEM is a good match for me.

Instead, we discussed different ways to get more nutrition in to me. I have been subsisting on a starvation diet for a year and a half and my body is simply out of reserves. After discussing the available options, we agreed that a Gastro-Jejunal Tube (G-J tube) inserted endoscopically, makes the most sense for me. A J-G tube will allow formula to go directly into my small intestine, bypassing my stomach entirely. It also gives me a valve to vent my stomach.

My doctor doesn’t do the procedure anymore, but he has a colleague who does and he is going to discuss my case with him. So we don’t have dates or anything yet. And I already have a meeting with my nutritionist to discuss details on how to titrate up my formula intake. If you ramp it up too fast, you end up with cat food on the ceiling*!

It is our collective hope that allowing my body access to the nutrition it needs will allow me to lead a fuller life. However, and this is a Big Thing, none of this does anything for the fatigue, nausea and pain that comes with GP. That will continue to be a very limiting factor. But hopefully, more on that in another post.

*That was a joke with a very limited pool of people who will get it. Back in the day, we had to tube feed Artemis for a short period. We had no clue what we were doing and we went too fast and the food shot right up and hit the ceiling.

I created this blog so that I can keep the important people in my life up to date on my health. If it feels like you are coming in mid-story, that is because you likely are. There is a ton of background and catch-up information I hope to add in the immediate future. However, as I hope to explain in a future post, my functionality can vary hour by hour and day by day.

Basically, I am asking for your patience as I work to get this information resource up to date. Thank you.