Ben’s Health

In 2018, Ben's health collapsed during a hiking expedition across Europe, the Middle East, and India. So many things went wrong on this trip, and he developed so many chronic symptoms in so many parts of the body afterwards that getting any universally agreeable diagnosis has been challenging. Here are just some things that happened immediately before and during Ben's hiking trip.

After that, Ben was never the same. He developed an avalanche of symptoms, many of which never went away. Early chronic symptoms included:

Symptoms continued to develop. Additional chronic symptoms Ben developed before jail included:

These symptoms are well-documented in Ben's journal entries, conversations with friends and family, medical correspondence, and of course his medical records. Obtaining all of these records is no mean feat, considering that Ben saw dozens of doctors after his health collapsed. Please note that he has never been and is not a hypochondriac. Before 2018, he went to the doctor only every so often and never let health concerns dominate his life. Even after shoulder surgery in 2015 and despite developing disabling bilateral hand/wrist pain in the same year, Ben refused to become a worry-wart and simply got back to his life. This is powerful evidence that Ben isn't the type of person who by nature haunts doctors' offices.

Rather, only after he himself became haunted by the specter of a mysterious multi-system disease that wouldn't go away was Ben forced to spend so much time seeing doctors. Many of those he saw initially couldn't make heads or tails of his illness. His testing was mostly normal, they said, so they were stumped. Thus, Ben did what any person would do under the circumstances: he saw other doctors. Eventually, he obtained three overlapping diagnoses.

Both the ME and Lyme diagnoses were rendered by multiple specialists, some at the top of their respective fields. POTS was confirmed by tilt-table test at UCLA.

Because of the lack of consensus on Lyme and ME and because his symptoms kept developing, Ben continued searching for answers at doctors' appointments. He drove, he flew, he did whatever he had to do. Soon he learned he wasn't so abnormal. Many people with complex illnesses struggle for years to get a diagnosis. For example, lupus patients take an average of seven years to diagnose, and patients are expected to get misdiagnosed along the way. But Ben had only been pursuing a diagnosis for five years prior to jail, and it wasn't enough time.

As indicated earlier, not long before jail, Ben began testing positive for antinuclear antibodies, suggesting a positive autoimmune disease, and anti-dsDNA antibodies, suggesting possible lupus. The negative labs Ben got before jail included:

Ben spent five years before jail with untreated chronic disease, resulting in various forms of disability that predate his incarceration.

Prior to jail, Ben had remained functional only because he was able to adapt to his illness in many ways that aren't possible in jail. After entering custody, Ben's pre-existing symptoms began worsening and he developed new symptoms. Chronic symptoms that have developed since jail include:

His negative labs since jail included:

His level of disability has increased substantially since jail. Disability issues that have arisen since jail include:

Here's an abbreviated list of some of the reasons for Ben's worsening health in jail.

The result of all this is an inmate who can barely be said to be living. He spends often 16 hours hurting in bed, only to spend the mere eight he has left still mostly bedridden. If he attempts much outside bed, he is wiped out and must spend days or even weeks recovering, depending on the level of exertion. His chronic illness makes him more vulnerable to infection, and he spends every winter and often parts of the warmer months in a near-constant state of sickness, either because his weakened body can't win a decisive victory over infections or because he keeps getting re-infected, or both.

He wants vaccinations, but he must be relatively healthier to mount a strong immune response to vaccines. Since his health is only spiraling downwards, and since he's often dealing with new infections on top of his chronic issues, he's in a catch-22. The only way to stop the spiral is to diagnose him completely and then treat him thoroughly. Right now, diagnosis is at another grinding halt. Ben's blood tests and symptoms suggest the strong possibility of autoimmune disease, but his one rheumatology appointment in three years wasn't very helpful. The doctor said he couldn't find some of Ben's information in the system, and some valuable information was not known at the time of that appointment. Still, the jail has not scheduled a follow-up appointment. It's been five months since then.

Ben, who is still in his 30s, has had many heart-to-hearts with family, explaining his credible belief that he does not have many years left if the situation doesn't change. So it must change. It absolutely must change.