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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MS Blog with Boob Pic

Ms. Lab Rat is supposed to be a blog about an intrepid gal who joins clinical trial after clinical trial, surfing on the cutting edge of multiple sclerosis research.
Ms. Lab Rat is not supposed to be a blog about an anxious gal whose left breast is on the cutting edge of a surgical scalpel. But that’s where this MS blogger will be, while The Art Academy is closed for Spring Break.
Sorry.
(I know, I know, I shouldn’t be the one saying sorry. But have you have ever met a person who did not apologize for a physical misfortune beyond their control, be it mild hearing loss, Sorry, could you repeat that?—to terminal cancer, I’m so sorry I won’t live to see my baby graduate high school. You want to say: I’m the one who’s sorry.)
In this case, Gentle Reader, you needn’t be sorry for Ms. Lab Rat—yet. I have health insurance. (Thanks, husband.) I have a support system in place. (Thanks husband/family/friends.) And I don’t have cancer. (As far as the pathologists can tell.)
What I do have are a few cells that kind of look like they could turn into cancer…or look like the type of cells that tend to hang out with cancer cells. The pathologists couldn’t really agree on what to make of these suspicious cells. Which was why it took them a week, and not the promised one to three days, to call me.
As it happened, I got this call just two hours after I’d learned I have severe osteoporosis, and just a half an hour before I was scheduled to teach Artist as Reader. I was in the middle of an enormous copy job, which involved making 17 two-sided copies of the 92 page screenplay of Get Out. The call made me laugh. Two bad health updates in two hours? Who gets that? It seemed too bad to be true. My biggest fear remained the complicated copy job. I really really hate copier jams, especially so close to class time. Trivial frustrations like that are somehow harder for me to take then even super grim news. The printer didn’t jam. I was genuinely relieved, and genuinely curious to see what my students would think of the manuscript. I couldn’t be bothered to update my blog post about my osteoporosis diagnosis with a dramatic PS. I had a class to teach. Besides, my mom reads my blog. (Hi, Mom!) I didn’t want to worry her.
I am now scheduled for a third biopsy, a surgical excision that will scoop out the entire perplexing nodule and resolve any unanswered question. I’ll be glad to be rid of the uncertainty. I’m not yet skilled at living with anxiety. Last night, I had a hard time getting back to sleep after my 4th or 5th fourth trip to the bathroom (thank you, MS bladder.) I tried meditation after meditation, but stayed awake from 2am to almost 4. (I fell asleep just fine after trips seven and six.) OK, maybe it’s time to botox the old bladder again. Do you see how living with MS is in itself a full time job?
I was grateful to have yoga today, to help me unwind and expand, physically and mentally. As I had hoped, I was not the only student at this week’s class for yoga with MS and Parkinson’s. I met two intelligent, ambitious women there, an accomplished artist and an accomplished writer, and best of all, I got to catch up with my buddy Monica. We lingered over our Wahls-compliant lunches to chat about breast biopsies, and so much more. In a few short weeks, we’ll have matching scars.
It seems no MS story is as simple as just one diagnosis. At least, not for those of us lucky enough to be living decades with MS—long enough to encounter the usual trials of mere aging. Maybe Ms. Lab Rat is a typical MS blog, after all.

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The Yoga Groove

welcome

My long time yoga teacher, Sharon Byrnes, just started two new classes for people with MS and Parkinson’s at her studio, The Yoga Groove. Today I was lucky enough to have a one-on-one with her, so I got to call all the shots.

My body has given me a pretty long to-do list. I’ve been wanting to take a class on how to fall since learning that I have severe osteoporosis. (I was so eager, in fact, that I showed up one month early to  “Free from Falls,” a class which will be offered by the MS Society starting March 6.)

I requested we work on fall prevention. Sharon started me working on transitioning through various yoga poses from against the wall, instead of from in the middle of the room, so that I could use the data from the wall to keep my shoulders, back and hips in alignment while moving from two feet to one foot and back down again. She gave me blocks, so I could safely extend my body and achieve more from each pose.

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foot drop

You will notice, in the second picture, that my foot droops down. Ideally, my foot and leg should be parallel to the floor. Ha. Ha. I know this is the Internet, but I’m still going to show it like it is. What you’re looking at is called foot drop. It’s an MS thing. When I’m tired, like I was this morning after treadmill and weights, I have to use extra effort to lift my right foot off the floor as I walk (or do yoga.) Foot drop has been a big culprit in limiting my walking. Until I got hand controls,  it even limited my driving.

I asked Sharon about foot drop. I’d seen what looked like a helpful video on YouTube…but I wanted to verify that the advice it gave was any good. Sharon watched me demonstrate what I’d remembered of the video, which entailed sitting in a chair, raising the foot, swiveling it in one direction over seven seconds, and then back in the other direction seven seconds…to be repeated over three minutes. She immediately made three suggestions: 1. to keep my ankles in line under my knees (I should know that by now!)  2. to use a resistance band (I tend to be lazy about adding props.) 3. to work out both ankles, not just the one that gives me trouble,  working right/left/right instead of working the right ankle exclusively.  Her suggestions affirmed what I have learned throughout the years: YouTube is no replacement for first hand experience from an experienced instructor.

She then got out a timer and had me tap my foot. I produced 28 taps in a minute, which was less than her 48, but not as far from the 32 taps per minute I should have for a goal.

After our session, I immediately texted my friend Monica, who is off having a grand time in New Orleans this week and couldn’t attend class. She wanted to know all about how to prevent foot drop. As Sharon remarked on my way out, students learn a lot from their teacher, but learn even more from each other. My one-on-one with Sharon was amazing, but I can’t wait for next week, when my peers will be there, too.

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Everyone Is Doing the Best They Can

The main perk of teaching is that I get to learn a lot from my students, who range in age from 18 to 96 years old. Last semester, one of my students on the younger end of that spectrum said something so profound, I’ve wound up repeating it to myself every day.  “Everyone is doing the best that they can.”

When I was that student’s age, I’d had the opposite response to those around me. I’d always been quick to call out posers, slackers and fools.

As the humiliations of my disease pile on, I find myself doing  many of the very things I’d formerly found inexplicable and utterly ridiculous. And that’s on a good day.

Take the treadmill. I’d never understood the point of it. As a writer, I’m fond of forward motion. You can’t do better than climbing a mountain to learn everything you need to know about a narrative arc. You can’t have a hero’s journey without setting off toward the unknown, somewhere beyond the horizon, preferably on foot, or at the oar. What self-respecting writer could prefer the tedium of walking or running indoors to the nonstop novelty of walking or running in the wild? Only a coward, or a terminal bore.

When my doctor discovered my bones are two standard deviations more breakable than the bones of a typical woman my age, she recommended I quit swimming — which she’d formerly lauded as the best form exercise — and instead try out the treadmill. She explained that I would have to submit to gravity if I were to ever have a chance at rebuilding my bones.

This is how low I have sunk: so far, the switch to the treadmill has been an adventure. My first day on it, I was grinning like a ninny at the novelty of elevating my heart rate. (Thanks to MS, I am confined to doing exercises at a rate that doesn’t raise my body heat: once the heat is on, the wiring in my brain blows out.) I only made it through five minutes. (And those last 35 seconds took some discipline.) I then tottered 15 feet to the ring of machines I’m familiar with—my toys!—and returned to my weight routine—low settings only, because strain could pop my retina. (Is this silly, or what?) I have since worked my way up to six minutes per treadmill session. And then I had my breast biopsy. I’d been planning to drive to the gym afterwards. Instead I was told to stay out of the pool (again?) and not lift anything over five pounds for that day. Theoretically, I could have driven to the gym for maybe six and a half minutes of treadmill, and the leg machines. Ha ha.  Instead, I opted to heal.

So yes, today, Gentle Reader, if you see a woman on the treadmill, she isn’t me. I ask you to see her as my student would see her. I ask you to assume that the woman on the treadmill is doing the best that she can.

Stay healthy!

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IMG_3573

My Take on Wahls

This afternoon I got an email from Kathy Reagan Young, from the FUMS Podcast Show. 

She wrote: I’m preparing to interview Dr. Wahls about the Wahls Protocol vs. the Swank Diet and I wondered how you’re feeling now (after your gallbladder attack) and how you feel about the Wahls Protocol now?

This was my reply: “I think the Swank Diet is an improvement on the Standard American Diet of mostly processed foods, but I suspect the lack of fats  does harm as well as good. My fatigue levels went up, not down, with Swank. When I turned to the study dietician for help on micro-tuning my diet so I could stay within Swank’s parameters, while remaining true to my goal of optimal health, she told me she’d have to check with Dr. Wahls first. When she got back to (me) she told me Dr. Wahls forbid her from making suggestions. My main motivation for joining the diet trial, instead of pursuing a diet independently, was to get coaching from the dietician. I suspect only those assigned the Wahls Diet got such coaching. This disparity is unethical in a clinical trial. If Dr. Wahls feels her diet can be proven objectively, she should have stayed away from having any say on the trial, and let it be proven independently. As that was going on, I got an email from Dr. Wahls promoting her daughter’s Go Fund Me site. I found that…distasteful.

Since the diet study, I have been following a modified, lower fat version of the Wahls Diet, reintroducing coconut oil and ghee very gradually, which is, I believe, what she herself (or her dietician)  would council. I wish I could tell you I’m feeling better already, but I am only a few weeks in. Last week I got hit with a diagnosis of severe osteoporosis, and on the same day I got told I had to get a second mammogram. I have a calcified lump on my breast that is getting biopsied tomorrow, so MS may turn out to be the least of my troubles. A good diet, a smart diet, is necessary, even if it’s not sufficient. We all die.
I believe Dr. Wahls has presented the world with a very smart diet. I also believe she is a flawed person. Just like you. Just like me.”
I’l be the first to admit that reply was a bit  melodramatic. I very much doubt I am going to die from this calcified lump. But I will die of something. And I will age. And likely, no matter how well I eat, no matter how hard I try to exercise, no matter how doctors I see, or clinical trials I  join…my MS will progress.

In her book, Dr. Wahls urges her Wahls Warriors to take a selfie before starting on her diet, so they can look back and see how they will “youthen” instead of age. I felt sorry for Dr. Wahls when I read that.  She, too, is going to age, she’s going to die…and she may very well progress. If she does, she’ll feel incredible pressure to hide it. I feel that pressure, every day, and I haven’t summoned a vast movement of “Lab Rat Warriors” to validate my dance with this disease. I’m sorry I’m being hard on her. She’d doing the best she can. I’m doing the best I can. I just refuse to be a Wahls Warrior.

 

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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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