Fighting Gastroparesis and Autoimmune Autonomic Ganglionopathy

I first got sick the last week of April 2021. I was 145 pounds. Today I weigh 90. I’m very limited on what I can eat. Mostly baby food and liquid. Can’t do dairy. I found a protein shake safe for gastroparesis. Drink Wholesome. I mix it with flax milk. I am a nurse and continued to work until my body shut down on 2/28. I did FMLA, and short term disability. I was supposed transition into long term disability, but it took the doctors so long to figure out what was wrong with me that I was pushed into a pre-existing condition clause and my claim was denied. (Official diagnosis made with gastric emptying test on 2/7 with T 1/2 157 minutes…grade 3.) I have an EPO insurance, so I could only see doctors within the network of the healthcare system I work for. All have deferred to a higher level of care, that doesn’t exist in our network. Case management signed off my case as it was too complex. I have managed to get on to be seen by the gastroparesis team at the Cleveland Clinic in Ohio on 8/3. Fully funded, no cost to me. My gastroparesis is caused by an autoimmune disorder called autoimmune autonomic ganglionopathy (AAG). Very rare, but the main doctor there, Dr. Cline has written articles and podcasts about it, so, I have hope. I’m scared. I’m physically dying and fighting malnutrition. Has anyone had any experience with Cleveland Clinic?