I follow as closely as I can the tracks of my silkee as she wends her way along the strand. The call of the sea has been strong of late, as she is suffering most grievously here on the shore.
Shortly after the previous post, some nine months ago, she began to have painful spasms in her throat. Soon she could not eat normal gluten-free food. She had to go to a soft food diet. I took her for an EGD. A few days before the procedure, she began having a different kind of chest pain. We told the anesthesiologist, and he demanded a cardiac workup.
Off to find a cardiologist, who found low to moderate blockage of one cardiac artery, and prescribed a vasodialator that kicked off abdominal migraines (twelve to eighteen hours of non-stop, uncontrollable vomiting). Then another med, and a third, all triggering abdominal migraines, before she dropped her as a patient. The GP refused to prescribe her abdominal migraine meds, because of the heart condition. She was having ten to twenty episodes of cardiac pain a day, sometimes passing out, popping nitroglycerine pills and enduring the resultant headaches. Off to find a second heart doc. Insurance refused to pay for an arteriogram, we waited to get one done as part of a research project.
By this time she was barely holding on, the cardiac pain and fatigue were so severe, she was unable to do anything: write, read, watch TV. Her depression worsened. Her FTD was getting worse. Before, she had a wall up to keep out the unwanted thoughts generated by the dying neurons in her brain. She has practiced for fifteen years a Theravada Buddhist mental culture, anna-panna-sati, mindfulness of in-and-out breathing, the Burmese Forest School version, brought to the United States by G. V. Desani. She has also her japam, and ishta as a bhakti yogini. These kept up the wall for years. Now the wall came crashing down. Nightmares happened while awake as well as in sleep. Hallucinations occurred, quickly recognized as such, but disturbing, nonetheless. She sometimes feels abandoned by God, and has to fight through her own dark night of the soul.
She began falling, and re-injured her knee, repeatedly. This kicked off pain crises involving her RSD. Her pain has been out of control for months. She now must use a chair-side toilet, as the bathroom is too far away for her to walk. Other, new pains appeared. Intense, sharp, deep joint and bone pain; greatly worsened fibromyalgia-like pain.
Cardiologist number two had no clue about how to treat cardiac angiospasms. I did the research and recommended a treatment plan for him, which he prescribed. At least he finally gave the approval for the EGD.
The EGD found no pathology other than mild irritation of the lining of the esophagus and stomach. Smooth muscle spasms again. Again, GI had no clue of how to treat it. Referred her to other, useless specialists (we could do some tests, but we couldn’t do anything to treat you, regardless of the outcome of the tests). Twenty minutes on the internet yielded therapies apparently beyond their ken. Now off to find a doctor smart enough to prescribe them.
Her heart pain is now fairly well controlled, using the beta-blocker, metoprolol. This med also eased the nightmares that she has suffered for years.
Her throat spasms are worse, she cannot have even soft food. She’s on a liquid diet, and sometimes has problems even with that. Cooking was a way to show her love, now that is gone, too.
Typing is more difficult for her, neurologically. So we adapt. She will tell me what she wants to write. I draft, she comments, and we repeat until she’s ready. This is the first product.
I am dying 