A Day in the Life at the NIH Triali

Nothing ever goes exactly as planned in the NIH. This is an observation, not a criticism. Sometimes, a change in plans works to my advantage. When my husband and I arrived promptly for my seven a.m. appointment, I was told my eight a.m. MRI would have to be rescheduled. There weren’t enough technicians. My husband and I are adept at such situations. My body’s fickle insurrections have given us plenty of exposure to the changing of plans.

My first appointment was to review the revised consent form with the magnetically charming nurse Naomi. Within five minutes chatting over the forms she’d told me enough about life in DC for me to recommend Chimamanda Ngozi Adichie’s novel Americanah. As it turned out, Naomi had read that book and loved it, loved it so much she’d read it non-stop through a red-eye flight to Dubai, forgoing in-flight movies, forgoing sleep.

It was Naomi’s job to inform me that I would not be getting better care at the NIH than I could get at my local neurologist. I adore and admire my local neurologist. But I ask any of you with MS: does your neurologist have time to assess your condition for four hours? The level of care just does not compare. And more importantly, my visit to my local neurologist is designed to help only me. An NIH visit is designed to help multitudes.

Naomi told me I might be eligible to be paid $200 for my spinal tap. (There is usually no payment involved in a clinical trial, just reimbursement for food and travel.) I was open to this change of plans.

After I saw Naomi, I saw Dr. W. The last time I’d seen her, she’d been displeased by how easily she could push against my leg. She’d uttered one syllable, “weak.” I’ve been working  on my leg strength ever since. This visit, I gave her sufficient resistance. But she simply gave me a new area to work on. “You have shitty balance. You can improve that. Practice!” I’d improved my strength. You can bet I’ll improve my balance

Dr. W proposed a change of plans even more extravagant than Naomi’s $200 compensation. She noticed I’d just had a spinal tap the year before. She consulted the timelines of the studies I’m in, and declared I wouldn’t have to have a spinal tap this year, after all. This piece of news was an order of magnitude more exciting than the prospect of a spinal headache, and two hundred bucks. “I am your advocate,” she declared. We fist bumped.

Next came  the auxiliary scales. I performed the same battery of tests I always do—I did worse on some, better on others—all in all, it seemed a wash. Dr. W will be calling me next week when the data is in.

Further updates on this visit will have to wait until tomorrow. I am tired, my legs are crawling with electric pain, and my husband and I are planning to get up early and take the Metro into DC tomorrow to visit a museum.

Thanks for reading!IMG_0049

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The TRAP Trial Begins with the Lifting of a Magic Latch (Part 5 of Ms Lab Rat’s Latest NIH Adventure)

At the close of my most recent installment of my chronicle of a Day-In-The-Life of an NIH Lab Rat, I was about to enter the phlebotomist’s cubby.
You notice I then abandoned the narrative for blog posts about light subjects such as breakfast and…biopsies. Needles. I just can’t get around them.
Gentle Reader, I am not so fond of needles. You would think, after over twenty years of self-injecting medications—once a month for Zinbryta, once a week for Avonex, once a day for Copaxone—I would be jaded by now. I am not. I squirm when I see an injection on TV. (For me, the most memorable moment of the very memorable movie Traffic occurred when the daughter of the anti-drug Czar smiles drowsily as she shoots drugs through a needle into her arm. I have yet to smile drowsily while injecting. It’s a goal.)
As I took a seat in the phlebotomist’s chair, I couldn’t help but notice a thank you note strategically posted across from the hot seat. Had I been a strategic blogger, I would have taken a picture of the note so it could later serve as the featured image of this post. But that’s not the person I am, nor the person I want to be. There was a brief period of time when I used to collect experiences for my blog. Once I realized I was collecting experiences instead of experiencing experiences, I backed off. So that’s my excuse for why there is no photo of the thank you note, or even a transcript of it. I can only offer you a paraphrase. The note went something like this:

Dear Mr. So-and-So,
Our son has undergone intolerable challenges. Somehow you managed to make the whole ordeal fun for him, and we can’t thank you enough for being a light in this very dark time.
With gratitude,
Mom and Dad of a Very Sick Vulnerable Boy

This note comforted the hell out of me. And put me on notice that I’d better not be wimpier than the Very Sick Vulnerable Boy.
By this point in my fairly vast experience with a wide variety of phlebotomists, I’ve learned that most are ordinary people, whose needles puncture flesh. But there are a few phlebotomists—a select few—whose needles create the sensation, not of a puncture, but of a lifting of a magic latch. So far, the phlebotomists I’ve encountered at the NIH fall into this latter category of elite magicians.
I did not ask this fellow to tell me more about this note he had on display. I’ve found, the hard way, that it’s best not to get personal with a health care technician when they are about to get to work. One time I asked a nurse, How was your weekend—a
seemingly innocuous question—and tears sprang to her eyes. The next thing I knew, she was telling me how her little boy had been out riding his bicycle right on their block when he got hit by a car. She then connected electrodes to the wrong place on my foot, and I endured 15 minutes of non-therapeutic electric shocks. Served me right.
So no, I did not ask this phlebotomist to tell me more about the little boy in the note. I was rewarded for my reticence. He told me—they all tell me—that I have good veins. And then he magically extracted blood from those veins, without my feeling a puncture, but rather, a lifting of a magic latch.

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We Interrupt this Narrative

I’ve been meaning to construct a nice, orderly narrative of my most recent visit to the NIH, one that didn’t jump around in time too much, but I’m going to interrupt this account at the point right before I meet my phlebotomist—Who wouldn’t want to delay getting pricked?—by announcing I have just now learned I have a new diagnosis—severe osteoporosis. Which I never would have tested for had I not joined this latest NIH study, which recommended a dexa scan.

I can’t afford to get too worked up about this. I’ve got an hour until I leave for my first day of teaching Artist as Reader. I know half my students from previous classes, and they give me great hope for the future. We are going to make art in response to the screenplay of Get Out, my current favorite move, The Sympathizer, my current favorite novel, and Don’t Call Us Dead, my current favorite poetry collection.

Don’t call Ms. Lab Rat dead. Osteoporosis is just another bump in an admittedly bumpy road. If I hadn’t been ordered to take a bone scan, I certainly wouldn’t have. And I wouldn’t have learned a kind of important new feature of my ever changing body. 

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Breakfast Break: MS Style (part 4 of Ms. Lab Rat’s Latest NIH Adventure)

When we last left off, I, Ms. Lab Rat, was sniffing the sickly scent of powdered sugar as I passed the by-now stale gingerbread houses on display in the secular cathedral that is the NIH (National Institutes of Health.) I had time to kill before my Phlebotomy appointment, so I took the elevator to the second floor cafeteria, which has an excellent salad bar. And discovered I was too early for salad.

Here’s the deal with my new Wahls-inspired MS diet: the foods I used to associate with breakfast are off the menu. No processed foods, no gluten, no grains, no milk (bye bye breakfast cereals,) no eggs, no cheese (bye bye omelets.)

Here is a picture of what breakfast looked like for me today: IMG_9271

You’re looking at bok choy and garlic escargot simmered in homemade chicken broth, topped with kimchi and dulce. The Wahls Diet calls for the consumption of four servings of leafy green veggies a day, at least four servings of colorful fruits and veggies, a meat, a touch of seaweed, a bit of something pickled. The Wahls Diet is also very very big on homemade bone broth. So this breakfast covers pretty much all the bases. (If I were a true purest, there would have been a little knob of organ meat floating around in the bowl, too. But that’s the thing about the Wahls diet. Or maybe any diet? You can always feel you’re not quite up to par.) This breakfast was yummy, by the way. But this kind of breakfast is not easily obtained on the road. Not even in a hospital. (By the way, what’s up with hospital food? Why are there so many unhealthy choices? Topic for another blog.)

Here’s a fuller, indeed cluttered picture of what breakfast looked like for me today, when I tell the whole complicated story of my MS maintenance:

IMG_9272

You are still looking at my pretty bowl of healthier-than-thou breakfast food. You are also looking at the supplements required for the clinical trial of the Wahls Diet:

5,000 IU Vitamin D3, 1 t cod liver oil, 5000 liquid vitamin B12, 1 mg folate, multi-vitamin.

Then there’s all the stuff I have to take for my funny bladder:

AZO, macrobid, and some other antibiotic I’ll be finished with at dinner.

Then all the stuff I choose to take for my self-designed Ms Lab Rat trial:

3x 100 mg Biotin (which I am hoping will eventually fix my bladder problems and get rid of three of the items above), 500 mg Hemp oil, local hemp oil, glorious hemp oil (which has helped me sleep and dream after many sleepscarce, dreamless years), 5 mg Lithium (which I thought was doing a fine job as a mood stabilizer, though I just learned that what I take isn’t anything like a mood stabilizing dose. So let’s call it my placebo.)

This is a lot to keep track of. When I graduated from the Swank Vs. Wahls clinical trial, I got a certificate (no joke) and a private viewing of a 20 minute video of Dr. Wahls that just served to delay the seven hour drive ahead of me. No t-shirt. The only remotely useful thing I left with was a booklet to help me keep up with all the details of living in a Wahls Diet world. (I had rallied hard for an app, but there isn’t one. Yet.)  For a few weeks afterward, I kept filling in little circles every time I popped another supplement, or finished another serving of leafy greens. But eventually I ditched the booklet. I want to feel a little less obsessive, a little less persnickety. Either that, or I’d already assimilated all the expectations. My brain had become the diet app I’d been asking for.

The morning of my TRAP trial, I realized I was not going to get a Wahls breakfast, or Wahls-ish breakfast before my blood draw. I guzzled a “green” drink I purchased from a vending machine and took the elevator down to Phlebotomy. A lovely woman handed me a white stub with a number. As I glanced down to read 32, she called, “Thirty two.” It was the Christmas holiday. I was the only patient in the waiting room. I filed past untouched trays of cookies and two pots of coffee and entered the orderly hive of numbered white cubicles, wondering if I’d recognize my phlebotomist. I had been there many times before.

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