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—osteoporosis. Which I never would have tested for had I not joined this latest NIH study, which assigned me—and here I am, jumping ahead of the narrative—Pioglitazone, a diabetes drug that might work in MS patients to rebuild the myelin shredded by a rouge immune system.

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. I still qualify to take two of the remaining three study drugs. I can only hope whichever medication I’m assigned to next comes in tiny, easy to swallow pills like the one I am about to discard. Bye, bye, Pioglitazone. At least we broke up before you broke a bone.

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Breakfast Break: MS Style (part 4 of Ms. Lab Rat’s Latest 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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Teetering on the Verge of TRAP (part 3 of Ms. Lab Rat’s newest adventure)

I didn’t jump into the TRAP trial eagerly.

When I first got a pamphlet from the National Institutes of Health advising me of my eligibility for a new study, I thought perhaps there’d been some mistake. This study was designed for people with progressive MS, the most serious form of multiple sclerosis, a most serious degenerative disease. That couldn’t apply to me. I was an MS success story. I was Ms. Lab Rat, the patient who had cleverly evaded a continued barrage of MS lesions by taking a fortuitous risk on an off-label drug. In over a decade of respite from new inflammation, neurologist after neurologist  told me I was doing everything right, told me I was doing great. None of them mentioned I was slipping into the progressive form of the disease.

And yet.

I myself had not been satisfied, had not felt I was doing everything I could to stop or slow the ongoing catastrophe that is MS. As much as I was grateful for the drug I was taking, I thought for sure that the drug had worked more efficiently when I first took it back in my late 30’s, when it was delivered off-label via IV infusion. The form of the drug that I later took for an NIH study, the form that eventually hit the market as Zinbryta, came in a little tiny vial, not a whopping big IV bag, and felt that much less miraculous. Sure, I was still avoiding MS relapses, but I was also no longer swimming for hours or taking long hikes. Or even short walks.

The cover of the NIH pamphlet asked, Is your MS progressing, in spite of treatments?

I wasn’t exactly sure.

Wouldn’t some neurologist have told me if my MS had become progressive?

One would think.

Would I have wanted them to?

Hell, no. Back in 2005, I fired a neurologist for telling me my MS was never going to get any better. Which started me on the search that led to Dr. Bielekova, who actually did make my MS get better, without ever making any promises that she could. She had prescribed the drug she was researching with great reluctance, because I’d been insistent. She’d warned me there was no guarantee of success. Yet it had been a success.

As I set the pamphlet down I saw Dr. Bielekova’s name was attached to the study. While I was still mostly in denial that the pamphlet could apply to me, I did have friends with progressive MS, friends who had lost their employment, much of their mobility, and in the worst case, much of their memory. Connecting them to an NIH study could give them access to some of the most nimble minds examining this insidious disease. I picked the pamphlet back up.

The trial proposed to measure the effects of four established medications, currently treatments for other diseases, to see if they could ameliorate the effects of MS. The drug that had changed the course of my disease had originally been used to keep the immune systems of organ transplant patients from attacking the transplanted organ; Dr. Bielekova had guessed that perhaps it could likewise be used to keep the immune systems of MS patients from self-attack. Clinical trial patients like me had helped to prove her theory correct. Apparently she was looking to repeat this success.

The pamphlet didn’t make any claims of how any of these four drugs might potentially help a person with MS. Instead, it went into detail about potential side effects. Which was all very above board. But not very tempting.

Furthermore, the timing of the pamphlet was off.

The pamphlet arrived in the spring, a time of hope. I had just enrolled in a clinical trial examining the effect of diet on MS. Wouldn’t it be wonderful if a teaspoon of cod-liver here, a sprig of seaweed there, would be all it took to fix me? I could only do one trial at a time. Why not stick with the wholesome one? The one without potential side effects.

When I called the number on the pamphlet, I disclosed my participation in the diet trial right away. I explained I was asking… for a friend. The doctor I spoke with was unfamiliar to me, but warm and sympathetic. She urged me to let the NIH pay to fly me out anyway, just to keep  updated on my progress with Zinbryta. I had nothing to lose beyond a wee bit of spinal fluid, which I would easily replenish. If there were signs of progression, I would qualify for the study. If it turned out I wasn’t progressing, well, that would be good information to have.

And that was how I’d wound up back at the NIH late last June for a spinal tap.

The results came in during the July 4 holidays. I got a voice mail message that I did indeed qualify for the study. The unspoken implication was clear. I could consider myself as having progressive MS. My calls to the clinic went unreturned. I blamed the holiday. Then summer vacations.

I didn’t want to admit to myself that I was devastated. I decided to look on the bright side. While the Swank Diet I was on for my current clinical trial wasn’t yet working any wonders, maybe its competitor, the Wahls Diet, would do the trick.  And if neither diet reversed my symptoms, at least there would be TRAP to turn to. If only someone from the clinic would return my calls.

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TRAP (part 2 of Ms. Lab Rat’s new adventure)

The vast lobby of Building 10 of the NIH was nearly vacant of the usual international mix of medical professionals and imperiled pilgrims, yet it felt cluttered. This majestic bastion of scientific research had been stuffed with numbered tables bearing garish gingerbread houses, presumably made by the in-patients and staff. It looked like a pop-up church raffle. I glanced past the hapless man marooned at the Welcome Desk and noted that the coffee shop was now barricaded by scaffolding. The scent of coffee had been replaced with insidious notes of powdered white sugar. I wondered if perhaps my system of always accepting the first appointment of a given span of available dates would finally let me down. We were three days out from Christmas. The speculation on the van was that the leading physicians would still be on vacation. I didn’t buy into that. I expected to see leading physicians. Then again, I’d also expected coffee.

I ducked into the area on my right to fill out the paperwork for meal reimbursements. Over the years, the reimbursement office has retained the right to perpetuate various iterations of needlessly awkward exchanges. The first few years I’d gone there, the cashier’s desk was an inch or two too deep for the cashier to actually reach the exchange window to grasp a lab rat’s ID or to pass a lab rat some cash. It added a bit of tension, a bit of comedy, to every exchange. After a few years of these capers, the cashier figured out she could use a pincer device to bridge the troublesome gap. Her victory was short lived. By my next visit, the entire office was moved. By the visit after, the “short-armed” cashier was gone.

The tradition of inventive obstructions was still in full force, I noticed. There was a sign in front of the office that receives reimbursement forms which instructed all form fillers to stand at a certain distance in front of the glass door, and further warned that those who did not stand would not be seen. In other words, Wheelchair Users, Begone.

Furthermore, the very layout of the office was designed to prevent eye contact, even with compliantly standing non-wheelchair users. The L-shaped desk for the sole employee in the office was set back and to the side of the glass door. The computer was placed along a wall at a ninety degree angle from the door, so that the occupant of the office effectively had her back to the door every time she looked at her computer. Once again, the office had been created to make it structurally impossible for the employee to do her job effectively.

I wish I could say this office is an anomaly in the NIH. It is not. There are doors in the MS clinic without wheelchair accommodation. If that’s the NIH plan to stop MS progression…it isn’t working yet.

The only other pilgrim there was a man sprawled out on a chair. Had he been conscious, I would have asked him if he needed me to signal to the functionary behind the glass door. Instead, I waited for the functionary to complete her personal phone call, then check her computer screen, then finally swivel somewhat to notice me standing the appropriate distance from the glass door, like a good wheelchair-free pilgrim.

She waved me in.

I used to feel unworthy of meal reimbursements. But that was before the drug the NIH tested on me came out on the market, and my monthly deliveries came with an invoice of seven thousand four hundred and something dollars per month.

I handed in my clipboard, feeling entitled to every last penny, darn it, and headed for my appointment at Phlebotomy.

The acronym for this new study? TRAP.

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