Cheaters Never Prosper

Let’s face it. Elimination diets are hard. Really hard. So let me recount what has happened on the days I’ve slipped up….

Cheat #1: Sushi. I knew gluten was something to avoid, sure, but I didn’t altogether believe the whole “grain-free” need. Until I ate sushi one night. My joints ached for three days.

Cheat #2: Donuts. I was trying to be so good. I went to Revolution Doughnuts (who, by the way, have delicious low-grain/low-gluten donuts, if you don’t have a nut allergy). Unfortunately, they were out of the “dough-nuts,” so on a whim I got a few of my favorites. Cake-style Vanilla Bean, yeast-style Cinnamon Sugar, and a Cinnamon Apple Fritter. In just a few hours I was exhausted and achy. It lasted for days.

Cheat #3: Choco-Pie. Not having eaten all morning, I couldn’t resist this Moon Pie-like treat a friend had brought in for class. I went home immediately afterward and slept for three hours in the middle of the afternoon.

I saw the rheumatologist last week, My RA is at a moderate level, so we’re having to up my dosage of Remicade to the highest possible amount and consider new treatments. I spoke with my doctor about the AIP (autoimmune protocol) diet I was trying, and she said it was a great idea.

I know what I need to do. I know what foods I need to avoid.

It’s difficult.

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Waking Up: How I Took my Health into my Own Hands

For the past year, I’ve been tired. Exhausted, really. I’d sleep anywhere from 10-12 hours a night, but still walk around like a zombie all day and take frequent naps. I was miserable. But according to my doctors, nothing was wrong.

Vitamin D levels? Normal with my daily supplements. B6 and B12? Fine. Thyroid? Enlarged, but showing no signs of hyper or hypothyroidism. So why was I so exhausted all the time?

I talked with my GP, with my rheumatologist, and with my friends who have similar autoimmune issues. My GP wasn’t very concerned at all, but after six months of pushing she recommended I start on Wellbutrin, an antidepressant. Don’t get me wrong, I’ve had my fair share of depressive episodes, but this didn’t seem like one of them. I was exhausted, sure, but I didn’t feel sad or upset. Still, I started taking a low dose of the medication. It didn’t help.

IMG_20150804_001340My rheumatologist seemed even less concerned. Fatigue is associated with some autoimmune disorders and can come as a side-effect of the Remicade treatments. I spoke with his PA Anna, and she mentioned that some patients have seen positive results after changing their diets. While she couldn’t medically recommend a specific diet, she did tell me that many patients she (and many of her colleagues) spoke with reported lessened inflammation with certain dietary restrictions: no gluten, no dairy, no alcohol, no refined sugar, etc. I’d tried some of this before to no avail, so I packed that discussion into the back of my mind.

Taking my health into my own hands

When both doctors reported no signals for the fatigue in my bloodwork and seemed rather unconcerned with getting to the root of the problem quickly, I took matters into my own hands. Because of the Remicade treatments, my rheumatologist orders a full CBC (blood workup) every two months and posts the results online. These worksheets became my obsession.

First, I will say this: no matter what your Google search turns up, check with your doctors about their validity. My GP has had to talk me off many a well-intentioned ledge where I just knew I had figured out the cause of my fatigue. Never be afraid to ask questions, or to ask about your options. Remember: it’s your body. Your doctors are there to help and have a lot of knowledge, but they aren’t perfect. If they say something won’t work, politely ask why. If you aren’t satisfied with that answer, don’t be afraid to ask another doctor.

Keeping this in mind, I started my own research process. When the usual signals for fatigue were fine, my GP asked to see the bloodwork from my rheumatologist. I should note that I am currently in the process of switching GPs because my previous practitioner is changing her practice. I wasn’t able to see her again before the change and share my findings, but I had put together a year’s worth of CBC workup results. Looking through them, I could see clearly when my surgeries had taken place. The neutrophil and white blood cell count would shoot upwards immediately following the procedure, then settle back to a normal level before the next workup.

I also saw a recurring pattern: high MCV, low alkaline phosphatase. My first thoughts were, “What the hell is that?” and “Why haven’t we talked about this before?”

Maybe it’s B12 malabsorption

And so, I Googled… MCV stands for “mean corpuscular volume,” and the higher it is, the larger your red blood cells. This can indicate a condition called macrocytosis, or macrocytic anemia, which is often a sign of B12 deficiency. A vitamin B12 deficiency does point to my symptoms – fatigue, depression, brain fog – but consistently my bloodwork has shown normal B12 rates. However, normal B12 levels don’t necessarily account for your actual B12 absorption rate (and can often underestimate macrocytosis). Some sites recommend a methylmalonic acid test. Buildup of methylmalonic acid in the urine indicates that your body isn’t using B12 the way it’s supposed to.

In other words, the tests could be wrong, and there are better tests I can try.

Other relevant causes for the high MCV could be a folate deficiency (my levels are fine) or past chemotherapy treatment. I was on cyclophosphamide (a chemo drug) for more than a year, so that could be the cause. (Also, myelositic diseases, megaloblastic marrow, leukemia, liver disease, etc…)

My solution: I’ve made an appointment with a new GP. I plan to discuss the B12 testing process with her and start on a B12 supplement.

Maybe it’s hypothyroidism

Here’s another case where my CBC indicates normal thyroid function, so says my rheumatologist, but several sites indicate that there are better tests to determine hyper or hypothyroidism. Hypothyroidism is often linked to an autoimmune disorder, Hashimoto’s disease. It also runs in my family. The only major difference I see in the symptoms of hypothyroidism and my own are my high heart rate, lack of weight gain, and lack of a goiter (thank goodness!) Still, it’s probably worth checking out.

My solution: Talk with my new GP about better thyroid testing.

Maybe it’s alkaline phosphatase deficiency!

This one seems pretty obvious, considering my alkaline phosphatase levels have been consistently low for at least a year. Beyond fatigue, other relevant symptoms include cold intolerance (check) and rapid heart rate (double check), as well as shortness of breath, constipation, and extreme weight-loss. And guess what? It can also be caused by B12 deficiency and hypothyroidism – as well as aplastic anemia, anemia, and myelogenous leukemia. So far, my symptoms and CBC abnormalities seem related.

All of these – B12 malabsorption, hypothyroidism, and alkaline phosphatase deficiency – can be subsequently linked to malnutrition. In particular, the need to increase and regulate levels of vitamins A, C, B6, and B12, folic acid, and phosphorous.

My solution: Look at my normal diet and make some changes.

Maybe it’s my diet

IMG_20150806_205816A few years ago, I ran into Christina, an acquaintance from high school, at the Five Points MARTA station. It was particularly surprising because Christina lives in Florida, we hadn’t spoken since I graduated ten years ago, and we were heading in the same direction. Talking with her on the train, I found out we had both been dealing with autoimmune disorders (me: rheumatoid arthritis, her: Hashimoto’s disease and narcolepsy), and we were both in graduate school for our doctoral degrees (me: political science, her: biomedical science with a focus on intestinal immunology).

Basically, she’s a badass, and you should check out her page!

I’m not one to believe that “things happen for a reason,” but I was glad to have had this conversation with Christina. Really, I wish I’d paid more attention and started my research on intestinal health back then, but grad students will be grad students… She shared her research on the link between autoimmune disorders and “leaky gut” – where your intestinal wall is too permeable and lets particles seep out into your body. Most of the current treatments for autoimmune disorders focus on inflammation and the overactive immune system. New research, like that of Christina and other scientists like Dr. Sarah Ballantyne, focuses instead on intestinal health. In other words, they are trying to treat the potential cause, rather than just stifle the symptoms.

When intestinal health kept popping up in my searches, I contacted Christina again for advice on where to start. She again mentioned the benefits of the paleo diet. If you haven’t heard the specifics yet, the essential idea behind the paleo diet is that our bodies haven’t adapted to many of the foods we regularly eat today. Proponents of paleo eat mainly meats and non-starchy vegetables, shying away from processed foods, sugar, and grain. The stricter autoimmune protocol refines this diet even more, acting as an elimination diet. For the first month, participants will avoid all grains, processed sugar, all nightshades, starches, alcohol, dairy products, and eggs. The will increase consumption of seafood, organ meats, and fermented foods and limit fruit intake. After “resetting” their system, participants slowly reintroduce foods to find out which are triggering an abnormal autoimmune response.

My solution: Try something new.

Going Paleo

For someone who spent 5 years as a vegan and generally tries to eat very little meat, going paleo sounded like a nightmare. Not only would I be giving up some of my favorite things (Ice cream! Baking!), I would be forcing myself to shovel down meat at every meal (very expensive, considering I only buy products from humanely treated animals). However, the exact months I went vegan in 2007 were the same months I started noticing joint pain, which quickly blossomed into a full-fledged flare. It’s also something I had never tried before, and I do rather enjoy seafood. So I decided to give it a try.

IMG_20150805_221532Whether or not you buy into the explanation of ancestral nutrition, the paleo diet does include much higher levels of the nutrients I may be deficient in (A, C, B6, B12, folic acid, healthy fats, and phosphorous). I started the autoimmune protocol (AIP) diet on July 15, 2015. On August 3, my alkaline phosphatase levels were already in the normal range, but my MCV was still high. By August 10, I had noticed significant improvement in my daily routine. Slight joint stiffness still made going to sleep a bit difficult, but when my alarm went off in the morning I was actually awake. Now I can get out of bed in the morning, rather than lying there another hour and a half trying to force myself to function. In the past few days, I’ve noticed the brain fog lifting, and naps don’t seem like such a necessity. The one time I caved and ate rice, my left knee screamed for three days!

I’m not saying paleo is the exact and only reason for the improvements I’ve seen. I’m certainly not recommending it as a one-size-fits-all “cure” for RA. I am merely sharing my own story from my own path. I cannot stress enough that everyone’s body is different and no one should change their diet drastically without fully understanding how to get the right nutrition from the new diet plan.

Remember: it’s your body, take care of it!

How to Throw Your Best Pity Party Ever!

538524_10100307570358459_563922595_nYou just found out your best friend has been sleeping with your significant other. Your cat has the flu. Your job promotion went to the guy two cubes down who can’t even find AutoSum in Excel. The fecal matter has found its way up and into the proverbial fan, and life seems like it just can’t get any worse.

We’ve all been there. From tragic hair days and fender-benders to volcanic eruptions of hot messes, sometimes the only thing that can truly make you feel better is a party. A Pity Party, that is!

I know what you’re thinking: wadded up tissues in front of a Meg Ryan marathon with a gallon of Moose Tracks slowly melting into sugary-chocolate soup nearby. But a Pity Party doesn’t have to be a cliché. There is so much you can do with this traditional fête!

So dab your bleary eyes, roll up those snotty sleeves, and let me guide you through the magical makings of a Pity Party miracle.

Step One: Theme

More often than not, a Pity Party is spontaneous and comes with its own pre-packaged theme delivered to you FedEx á la Universe. When this happens, there may be little else to do than dress it up in a sparkly sweater while calling your mom. But that doesn’t have to be the end! Yes, the given theme might feature cancer, but that doesn’t mean you can’t accessorize with adorable puppy photos from the Internet. I find that puppy-themed pity parties are best when you make sure to avoid adoption websites – else you end up with a new furry friend (or ten).

If you’re having a real downer, you might set the mood with Alanis Morissette’s Jagged Little Pill album or Beyoncé’s feminist power-ballads (for anger) and Adele’s first few hits or some old-school Goo Goo Dolls (for subtle angst). If you’re feeling really down, you can always break out Babyface, Tori Amos, or the big guns: “Here In Heaven” by Eric Clapton.

Whether your Pity Party is intended to cheer you up or help you let out all the frustration, choosing the perfect theme is key.

Step Two: Decor

What would a party be without the proper decor? Even fraternities have learned to spice up their keggers with Tiki torches and brightly-colored leis. Once you have your theme, decor and wardrobe are your primary means of of setting the tone.

First things first: what are you wearing? My personal favorite outfit for pity parties is a long evening gown, accessorized with a sparkly tiara and bottle of cheap champagne. If you’re in a darker mood, you might try slapping on some thick black eyeliner and crawling into some pj’s from the bottom of your clothes hamper. Nothing says “Pity Party” quite like raccoon eyes and the strong, sour odor of cotton that’s been soaking in B.O. for the past week!

You may go with the traditional look of spreading boxes of tissues throughout your apartment. In that case, you might consider dressing up this version of the Pity Party with monogrammed handkerchiefs. I also highly recommend the childlike solace of a sheet fort, where you can blubber in privacy beneath a linen canopy to block out any and all happy light from the outside world.

Yet another route may be to decorate the living room with Styrofoam boxes of old Chinese food and the remnants of ripped-cardboard “plates” salvaged from multiple delivery pizzas. Which brings me to my next point…

Step Three: Food

As aforementioned, ice cream is the traditional food du jour, served with any and every type of alcoholic beverage. However, there are a multitude of flavors and brands to choose from! Fear not the option of buying several pints when you cannot decide on just one.

Beyond the world of cold and creamy lies a variety of comfort food choices: macaroni and cheese, chicken and dumplings, apple pie, chocolate cake, strawberry cake, cheesecake, carrot cake, really any kind of cake, truffles, salted caramels, lemon bars, candy bars, peanut butter from the jar… You get the idea.

Whatever you serve, just be sure it has enough calories to sustain a horse.

Step Four: Invitations

This may well be the most important part of the Pity Party. I recommend quality over quantity in your guest list. Know that pity parties can be difficult to fill, but they certainly let you know who really matters in your life. Do not be too upset if someone declines; much like Santa Claus, you can put them on a different kind of list later. The important thing is that you surround yourself with exactly the right people.

Or, if you prefer, lock the door and turn off your phone. Give yourself some time to quiet the madding crowd out of your thoughts, and allow yourself to bask in the rich emptiness of a party of one.

In all seriousness, take note of your Pity Party for exactly what it is, and be careful to remember exactly what it is not. It’s okay to take a moment (or an evening) to be upset and frustrated, to cry or shout at the television, to be selfish for a split second in time. Just make sure you’re using good coping skills and not distorting your situation too far out of proportion. Only invite those nearest to you to participate, and don’t leave them cleaning up the mess when you’re finished.

Know that at the end of the day, the world is still turning on its axis. There will always be someone out there worse off than you and someone better off than you. There will always be things worth crying over, but there will also be many things worth smiling about.

So take your moment. Have your party. Then throw out the trash and move forward with tomorrow. Embrace your life – whatever it may be.

Once More Into the Breach

eyesI’m sitting in a hotel room in Miami, mere hours from the next chapter in what has become a seven-year climb. I suppose I could think of my steady stream of surgeries as a mighty war against the scar tissue that continues to threaten my vision. Tomorrow’s surgery is but one battle of many in a long siege that the guerrillas seem to keep winning. Each time the surgeons believe we’ve beaten back the insurgents, and each time the inflamed warrior rises again to conquer!

I could see this as a mighty war, but no. Instead, I choose to see these trips as tricky crags on the mountain of my life. A mountain I have no intention of quitting, no matter how Sisyphean the task may seem. And Sisyphean the task may yet be…

In May 2014, my Atlanta doctor performed a surgery on my left eye (the one with full sight) to cut back the scar tissue which connected the eye to the eyelid. He stitched a donor cornea over the surgical site, hoping it would act as a barrier to keep the scar tissue from returning to envelop eye and eyelid again. By July, however, the attempt proved to have been in vain.

The tissue has returned in full force by now, and I am seeing Dr. Scheffer Tseng in Miami to try something old, but somewhat new. This time, it is a surgery of my own suggestion – one that I am proud to say Dr. Tseng agreed would do well to calm the tissue. He technically did a similar surgery for me in 2012. Despite medication and attempts to bring back sight in my right eye, the pain of it all was excruciating. Constantly inflamed, the scarring on my eyelids from 2008’s bout of Stevens-Johnson scratched mercilessly against my eye. It was far worse for the right one than the left.

Tseng believed the scratching may well be what caused the inflammation to ruin his remarkable surgery that renewed sight in my right eye for a few months. It had gone well at first! But as has been the case with the left eye, the scar tissue pressed forth – and in the right eye conquered all. So he used cheek tissue from my mouth to resurface the inner eyelid of my right eye, stopping the friction and easing the pain. And ever since my right eye has been blind, but calm.

Tomorrow, he will repeat the surgery on my left eyelid. It is my belief that the scar tissue continues to grow in an effort to protect my eyes from the constant scratching of the scarred eyelid. I hope that removing this friction will mean that the scar tissue no longer has a need to grow. Essentially, I’m negotiating with the terrorists of my body – not unlike the Remicade infusions which calm my RA.

And so, my friends, I go again. Once more into the breach. Once more up the rocky surface, with my fingers strong and my feet steady, hoping to make it past this next incline. Let’s hope for the best!

Try, Try Again

Do you ever wake up and just think, “Not today”?

For those of us with chronic illnesses (or even difficult habits), finding a way out can seem like an impossible task. After years of trying, the trying itself can become a monstrous chore. I know I have certainly had moments where giving up looked like the best viable option. Except, I would remember, giving up means getting worse.

There’s an anxiety that undergirds every new treatment. What if it doesn’t work? How much money am I wasting? How much time am I wasting? How much time do I have left, anyway?

Today I’m going into the eye doctor to be fitted for scleral lenses. Essentially, they’re large, hard lenses with a reservoir over the cornea to keep fluid on the eye. The hope is that this will ease inflammation and keep my eyes from growing scar tissue in an effort to protect the cornea. Sounds fantastic! Frankly, I’ve been hoping to get these for a few years now, but the expense wasn’t an option until just now.

Yet there’s still that voice in the back of my head – the one that reaches down and twists my stomach into knots. What if it doesn’t work? the voice asks. What if this was all for nothing, and you go blind anyway?

It’s a ridiculous notion, really. I’m in no danger of going blind anytime soon. We have several other options before that even becomes a worry. And yet, it remains my worry.

When my anxiety is high like this, I often turn to friends to vent. A simple text message at midnight to my sister will calm me, even if she doesn’t have the chance to respond until morning. For me, it’s about getting the words out of my head and sharing them with someone who cares. Other times, I might find it helpful to talk to a friend who makes me laugh or to watch something funny. I’m proud to say I own every episode of Monty Python’s Flying Circus, and it never fails to take the edge off.

My last resource, as a left-brained “Virgo”, is to plan. I plan what I would do if I did lose my sight or my ability to move freely again. I am instantly grateful for my vivid imagination and my dreams, for regardless of my physical condition, those have remained untouched. I have always loved writing and storytelling, and that has been my solace.

When I was first rebuilding my life in 2008-09, I happened upon a film that changed my life. The Diving Bell and the Butterfly is based on the memoir of a man who has a stroke and loses everything but his ability to blink his left eye. Through months of calculated blinks, he shared a story that gave me strength in that first year.

I actually haven’t thought about his story for a long time until now. Perhaps, if the appointment this afternoon does not go well, I will come home and read his book again. I can find hope in the powerful story and gratitude for my ability to read. Then tomorrow, I can research something new to try.