Help Deb $ achalasia foods, O2 copays, more…

I'm Deb.

Born Connnecticut Yankee, raised California girl , graduate Santa Rosa Junior College, Humboldt State College (now Cal Poly Humboldt), De Anza College, & UC Santa Cruz.

Assorted social memberships from childhood up:

Diagnosed with achalasia (a rare & incurable disease where one's lower esophageal sphincter tries to strangle your stomach) just before the first case of COVID-19 here in Washington, at end of 2019. Only real treatment (not cure) is surgery; gastroenterology MD ordered sleep sitting up and "full liquid diet" Jan 2020, diagnosis procedures through March 2020. Surgery had to wait until pandemic embargo on "elective" surgeries were lifted; June 2 I had a Heller myotomy with "wrap". Finally get to sleep in a bed (with elevated head/shoulders), eat soft "solid"stuff again. (I still need regular organic protein shakes to get necessary nutrients. Not cheap.)

Achalasia continues to provide challenges, because I may not eat anything crunchy or fibrous unless cooked soft or mashed. Further, I have had food allergies and intolerances all my life which limited my dietary choices—and TMJ since 1981 took crunchy out of my diet since then. Quality is now crucial in food list—organic items, grass-fed beef, free-range chickens, line-caught tuna. A brand of protein shakes (based on grass-fed dairy) which costs ~$30/dozen. That is my most important fall back food. I can eat meat…if it's been reduced to smithereens. Standard ground beef is ground twice. I need a third grinding to be able to eat it safely. Protein being important in diabetic diet.

After an episode of achalasia-caused misery early in January 2024, my GI doc prescribed another endoscopy to see how my esophagus is holding up. Short answer? 1: I have a "stricture" (tight spot) about half way down, in between enlarged esophagus which is also suffering esophagitis and tum has gastritis. Biopsies checked a couple of spots that are neither malignant nor indicative of H. pylori or its relatives (which cause most ulcers), and there's no sign of Barrett's esophagus, a pre-cancerous condition likely to develop with GERD—which happens because of the myotomy, etc.

Back in mid-2022, just to add to this fun, my gallbladder exploded inside me (disrupted is the medical term) around a pair of golf-ball–sized gallstones, resulting in four different infections, asymptomatic COVID-19, and an A1c of 14.4. The gallstones & pieces of gallbladder were removed July 23, 2022 and I was discharged to home quarantine with in-home nursing.

By the end of 2022 I was further diagnosed with IPF — idiopathic pulmonary fibrosis, one of many types of ILDs (interstitial lung diseases), and prescribed oxygen for sleep and exertion (such as pushing a vacuum cleaner or making my bed). Severe bronchitis in 2020 had gotten me a spirometry test (breathing); by December 2022 I'd lost a full liter (20%) of my lung capacity (and me a trained singer).

Now, at the end of January 2024, I was found to have an A1c of only 5.3; and ever since the end of 2022, my A1c has remained below 6.0…keeping it there takes work and a budget I don't have.

All of this adds up to a credit card debt that occasionally trickles lower but eating means quality food that I can consume without blocking the esophagus, triggering internal swelling of my throat and esophagus (my primary food allergy symptoms), or raising my blood glucose to unsafe levels.

Help would be much appreciated. The last thing I want is to leave my heirs a debt that my tiny little whole life policy will not cover. And the lung disease is running on a clock that's already ticked down 16 months from diagnosis with an estimated five years life expectancy from that point—confirmed reluctantly by the ARNP who diagnosed me.