Sep 182011

In a matter of hours I went from feeling well to spending two weeks in the ER/ICU.

That was merely the start: I would much later discover, way after this hospital stay, that there was a lengthy and maze-like trail to a diagnosis of  “Chronic Fatigue Syndrome,” even though the name “Myalgic Encephalomyelitis” or ME, is internationally recognized.

ME longform is a mouthful, but it doesn’t have the fey or loaded connotation that Chronic Fatigue Syndrome has. Patients often refer to the nebulousness of the naming as follows: ME/CFS.

But the onset for me, unlike others and similar to others also, was rapid.

It is difficult to cobble together a cogent story of how ME/CFS happened to find me. It isn’t difficult to recall how quickly my life unraveled after it did, how disabled I had become, and how far I would have to go to regain my health.

My two-week all-inclusive hospital stay was christened with a spinal tap, then later unceremoniously eulogized with a WMD-loaded PICC line  — a long catheter that runs through the inside of the upper arm to the heart. It delivered what my body felt was poison for four weeks.

Although the ER doctors at the time didn’t know it, and couldn’t have known it under their current practices, I was in heart failure. It would be many months to come before someone well-versed enough in my condition would be able to pinpoint this.

I hadn’t planned on this particular hospital stay, so my brain was stuck in problem-solving mode. Questions such as how was I to let my child know I love her, but I’m stuck here in Isolation until they can get a handle on things? What is everyone going to eat for dinner?

I’m not a TV watcher and was too ill to focus on it anyway as the room swung wildly to and fro. The bright sun had to be shut out with blackout blinds at all times. The doctors and nurses danced nicely around my oddities.

I had infections one gets when one has end-stage cancer or severe AIDS, strange things like streptococcus viridans. I had managed to get sepsis, an often fatal blood infection. I had managed to get meningitis. Being a fit and healthy person, the doctors were flummoxed as they performed fancy triage tricks to little avail.

I had crushing migraines for which I was treated with intravenous Dilaudid, a potent narcotic. There were weird mercurial pains for which Dilaudid was dialed up. It took a while for everyone to figure out that the dope was making me sick, literally. So I was carpet-bombed with a planeload of anti-nausea meds.

The inevitable gallbladder failure and subsequent removal was almost mindless for me as one could well imagine at that point. Thankfully the surgeon let me wear a nightgown I used to love (and still have but never wear).

Like Sisyphus fruitlessly rolling his boulder up the hill, there was this incredible brain fog alongside an unfortunate desire to think. The iPad became my companion, yet my bête noire. It was getting harder and harder to look at because I was seeing double. This was the light in the prism that caught my doctor’s eye more than anything else. My vision problems were making little medical sense.

Once in the middle of the night, a nurse wrote his phone number on my room’s board. He wanted to ensure I knew he owned a house and a BMW, was single and looking. I fingered my wedding ring (was it still there?) as he told me he could ‘push Dilaudid better than any nurse.’ He put a double underline on the board under what he thought my diagnosis should be: ulcerative colitis. When I inquired about him the next day to the Charge Nurse, he became a specter no one had seen. My primary ICU doctor, always congenial, was furious.

With this one exception, I adored the nurses who were my saving grace. Most were Filipino, loving, kind, knowledgeable, anticipatory – I needed that as I’m not one to grouse loudly for things.

The nurse who put in my PICC line was an unbelievable patient advocate. Not that I wanted to stay another day, but I was supposed to. He was the one who noticed the most and made what needed to happen happen. With six or so doctors flitting in and out of my room, it was hard to keep me straight.

A mystery nurse I will never forget named Peggy called to tell me “don’t leave a single stone unturned.’ If I had met her during my stay, she was not familiar to me in any other way than the lilting leave-behind of her Tagalog.

I was catapulted into my bed at home the day before Independence Day. How apt is that? I was sent home when I could stop vomiting and eat some Jell-O on the way out the door.

I watched the fireworks on the Fourth of July, which were thankfully happening across the street from our house, clothed in a pile of sleeping bags my husband had positioned for me so I could see all the action. Watching the action has become quite the thing to do since then. And from this focal point of stillness I’m still turning over stones.


Sep 062011

NPR, I really thought I could count on you to be what you describe yourself as on your about page: a “thriving media organization at the forefront of digital innovation.” On Monday’s two segments on ME/CFS here and here you let me down.

The first segment of Monday’s Morning Edition began well enough, with first-hand accounts from ME/CFS patients. They sounded credible, and one was eloquent enough in her description of ME/CFS vis a vis cancer, that she actually envied the way cancer patients are treated by the community at large. This was powerful and hit home.

Then you brought out the heavy hitter Tony Komaroff who explains how it’s hard to define ME/CFS and that doctors are still skeptical because the ‘syndrome’ is being defined by patient symptomology. You then go into how it screws up your brain, your immune system, your energy metabolism, your life.

After that you trot out the gammaretrovirus, XMRV, and promptly kick it right back to the curb. Sorry, guys! It was as if the writers cribbed all the press releases on lab contaminants the night before. Where’s Amy Dockser Marcus when you need her?

But the kicker was the second segment where you get real down and dirty with CBT (Cognitive Behavioral Therapy) and GET (Graded Exercise Therapy). As if we can’t get enough of our two best friends, there they are again on NPR for the whole world to have a listen to.

Apparently it would behoove ME/CFS patients to “change how [we] experience our symptoms.” We’re a whiney lot who catastrophize and need a serious slap in the face with positive thinking.  Also, if we aren’t wallowing in our own misery, then we’re without a doubt so out of shape we just don’t even get it. No, we are worse than that, we are ‘deconditioned.’

So. Let me see if I get this? If we get off our duffs and meld slowly back into the bionic selves that we were before we got the ‘grippe’ and take the talking cure, then the disease was just nothing more than a stepping stone to our own self-actualization?

As I wrote before, how I wish it were true that ME/CFS patients are simply depressed and deconditioned.

A little light creaked through the door when Dr. Lucinda Bateman spoke on your program. A clinician with experience, who’s been in the trenches since the 80’s outbreaks in the US, she gets push/crash. She understands why ME/CFS patients want to do, do, do when they feel good, and that these same patients ‘crash’ afterwards with disturbing symptoms. She doesn’t get CBT, she says. She doesn’t know the cause and doesn’t think GET will do anything beneficial. And like pretty much everyone with solid mental faculties, she waits for science to pinpoint the cause of ME/CFS.

I wonder, what is it about XMRV that the majority of the press is doing such a lousy job researching it? I know science reporting is hard, but this is as important as AIDS!

You know, positive thoughts and fresh air benefit people who suffer from any chronic illness no matter who they are. They just won’t cure true ME/CFS.

 Posted by on September 6, 2011
Aug 212011
Hammer Found a Nail: Why CFS Patients are Mad at Simon Wessely

Now I didn’t know who Simon Wessely was until I got ME/CFS. Once that event came into my life like an eighteen-wheeler at three am on a long haul, I started seeing his name pop up just about everywhere.  You see the British call a truck a lorry, they also call CFS, ME, or Myalgic Encephalomyelitis, [more]

 Posted by on August 21, 2011
Aug 172011
A Layperson's Guide to the State of Knowledge Workshop

Back in April, just as I had crash landed to the ground and serendipitously found a great ME/CFS doctor, there was a little symposium in Bethesda, Maryland at the National Institute of Health. It was sponsored by the The Office of Research on Women’s Health, and a couple of big ABC organizations, the aforementioned NIH along with the HHS. This [more]

 Posted by on August 17, 2011
Jul 152011
GcMAF Treatment Stymied?

I was so excited to start a new therapy for CFS, CFIDS, ME, whatever you want to call a redheaded stepchild neuroimmune disease with no name. But it won’t be, at least for now. I’ve been alerted that shipments of GcMAF to the US from BGLI in the Netherlands are temporarily suspended due to recent confiscations by the [more]

 Posted by on July 15, 2011