Do You Know the Way to San Jose or Stanford’s Fine Too

I’m flying but I would’ve walked. I’ve been on the waiting list for an appointment with one of Dr. Montoya’s associates at the ME/CFS clinic at Stanford for well over a year. I feel well today—as in no symptoms except for freezing hands and I just can’t be that weirdo that wears gloves on a plane. Ski jacket, fine, I’m headed to San Francisco, after all.

As I was packing my two inch thick binder of medical notes into my bag, I came across some research I’d compiled a while ago. What did people do before the internet? One of the notes from 2014 is about the super common CBC (Incomplete Blood Count, I mean Complete Blood Count) not being an accurate measure for detecting ME. So, wasn’t that kind of what my last post was about? I think so. This is why I still write on my hand—because I forget what I forgot. It’s nice sometimes. Surprise!  Surprise!

Back to CBC.  I went to my primary with a BRAND NEW…

baby

…SYMPTOM! I didn’t want to wait for my Stanford trip because this was a novel symptom and one that I was sure was unrelated to ME. Are you familiar with the Thompson Twins?  Remember the song “Doctor! Doctor!?  I thought those guys were hot  Anyway, my kidneys were aching! aching! so badly that I found it hard to stand straight. Yes, I know where my kidneys are. Let me be clear, NOTHING HAPPENED. No falls! It was not a muscular-skeletal feeling. Currently, I take a daily antibiotic to ward off recurrent UTIs (an INDIRECT symptom of ME). A couple of years ago, I had to explain, repeatedly to the skeptical nurses, doctors and lab workers that I DO know how to wipe. Finally, a urologist prescribed an prophylactic antibiotic.

Although, I had never experienced actual kidney pain, I thought I may have wiped wrong again—KIDDING—KIDDING!!  I thought I may have another infection. I went to my primary doctor and she…wait for it…took blood and urine and today, as I was in the airport to fly to Stanford, I received a call and an email informing me that everything was NORMAL.
I googled CBC and and ME again but couldn’t come up with too much and, of course, I don’t remember what I came across three whole years ago, and I take semi-regular showers so the writing on the hand only helps for a day or two. I did come across a great website/blog by not a patient but an advocate of ME named Stephanie Land. Can you believe we have an advocate??!!
I like Ms. Land. She’s smart, well-read, well and kind, clearly. So she came across a study that suggests there might be some use for the CBC when it comes to ME. Glucose levels are purported to be significantly lower than healthy cohorts. I looked at my latest glucose results and, though not below the “normal” range (65-99 mg/dL), it was 69. So, low but not, you know, necessarily meaningful. Honestly, reading the lab results is about as helpful to me as reading the back of a cereal box.

Here are some clarifying and poignant comments on ME that Stephanie Land brings to light in her article “Chronic Fatigue Syndrome-It’s a Deadly Disease.”

Here is direct link if you’re curious but I’ll try to paraphrase:

http://www.sheknows.com/health-and-wellness/articles/1119407/chronic-fatigue-symdrome

  • A study by JASON LEONARD found that the median age of death as a result of cancer in the general population (presumably in the US/North America) occurs at the average age of 72, but for those suffering from ME (not sure if this refers to just those with a documented diagnosis) the average age of death is 48!! FORTY EIGHT! As for heart failure, the average age of death is 83. For ME sufferers? 59. A physician and public health official likens ME to the AIDS epidemic. It was largely ignored until it became an epidemic (in 1984, the head of the U.S. Public Health Service claimed that AIDS was no threat to the public).
  • Film maker, Ryan Prior, released a documentary about ME in 2015 called “Forgotten Plague” and, like Jennifer Brea’s “Unrest”, these are not films I’ve been able to pick up on Netflix. He made the film as an advocacy mission to bring awareness and, subsequently, his studio was inundated with phone calls from struggling people with ME looking for help, desperate for resources.

*Side note-Unrest is being released but only in about five major cities and, well, people with ME aren’t often ready for a road trip.

  • MALE PATTERN BALDNESS (MPB)

The National Institutes of Health spends roughly 5 million dollars researching MPB every year. They spend the same amount on ME research.

  • Stephanie Land highlights the story of mom, Janet DeFoe . She left her career to take care of her son with ME.  She states, “I’m in there looking at my amazing son…knowing there are these people who think it isn’t real. It’s like someone were to get run over in the street, smashed to bits and bleeding, then someone says-there’s no such thing as cars.”

By the time I am editing and posting this, I am run-down from the trip.  As soon as I feel up to  it, I will share about my experience at Stanford.  Stay tuned…:)

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