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.

Pressing the Reset Button

handNow and again, there comes a time when we just need to take a breather and hit the reset button on life. Frustrations mount, stresses build, and complications twist everything into a knotted, tangled mess. You can’t always walk away from your stressors – usually you can’t – but you can take a step back. You can take a moment to yourself and reenter the situation with a fresh perspective.

This month, that’s exactly what I’m doing: Resetting.

Resetting My Body – Starting AIP

For those who have been following the blog for awhile, you know that I’ve had trouble with chronic fatigue for about a year and a half now. For months at a time, I would need 10 to 14 hours of sleep every day. Even awake, I wandered through life in a fog, exhausted and unmotivated. Two things entirely contrary to the life of a grad student!

carbsWhen my doctors couldn’t figure out what was wrong, I decided to take my health into my own hands. I started researching my symptoms and found the autoimmune protocol paleo diet. No grains, no legumes, no dairy, no nightshades, and no starches. Yikes! As someone who has spent most of the past 10 years as vegan or vegetarian, it was pretty scary to think about eating animal flesh at every meal. However, all of my symptoms kept pointing to the AIP as a way to reset my digestive system and stop the extreme autoimmune reactions causing my fatigue and inflaming my joints.

This past weekend, I celebrated my birthday with all my favorite foods! Ice cream, cupcakes, pasta, chocolate… 28 never tasted so good. September first marked day one of my 30-day AIP reset. I’ll be updating SuddenSight with my posts about the experience, so keep checking back for updates!

Resetting My Mind – Taking a Step Back

The fatigue, as well as numerous setbacks with my eyesight since January, made finishing my master’s degree this summer, well, difficult. I did manage to turn in everything and have my paper accepted (hooray!) Still, moving forward I decided I needed to recognize my physical limitations.

Even on my good eye days I read at half the speed that others in my program read. When I’m sleeping 10 hours a night, it becomes virtually impossible to keep up with the 60 to 70 hour work week required to keep up with three graduate classes and teach a class. So I took a step back and slowed things down for a bit to let my body catch up.

I’m only taking two classes this fall, and I’m pushing myself to make more time for yoga classes and cooking – my favorite relaxing hobbies.

Resetting My Blog!

ice creamTaking all of this into account, I’ve also decided to shift the focus of this blog a bit. I don’t want to spoil too much, but this fall SuddenSight will be relaunching with an all-new look! Get ready for more health and lifestyle posts, a recipe section, and guest bloggers featured each month.

Stay tuned for more news!

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.

A Good Day

teachingpicSo often when you have a chronic disorder, especially a painful or debilitating one, it can be difficult to talk about the good days. That seems counterintuitive, right? Shouldn’t we want to talk about the good days more than the bad?

Of course we do! Thinking of the good days is what gets us through the bad ones. And yet, so many times when I’m writing on this blog, posting on Facebook, sharing on Twitter – I find myself posting far more frequently when I’m frustrated or hurting. Certainly those are times when I need support – of course! And I have to admit that posting when I need support has made a tremendous difference in my recovery time and overall attitude. Yet I also find that posting when I’m happy – on the good days – is just as important!

So here today, just for all of you, I am posting my sheer happiness in waking up this morning on a gray winter day in Atlanta, when the silver lining seemed so shiny and bright…

Mornings

Mornings have never been particularly easy for me. As a kid, I had insomnia, and waking up during high school often meant three different alarm clocks that invariably were destroyed or slept through. But for the past nearly seven years, mornings have been near impossible.

If you haven’t yet read about Christine Miserandino’s Spoon Theory, it’s the idea that everyone wakes up each day with a certain number of spoons with which to allot varying daily tasks. Take a shower? Spoon. Go to work? Three spoons. And so forth. But we don’t all get the same number of spoons. And for some of us, a shower can cost a helluva lot more than a single spoon.

Mornings for the past seven years – since my SJS episode – have been like waking up with more than a few of those spoons shoved into my eyes. I’ve undergone around 15-16 eye surgeries, some here in Atlanta and others with a fantastic SJS specialist in Miami, Dr. Tseng.

It was my first surgery with Dr. Tseng in 2011 that prompted me to start this blog. He was giving me sight back in my right eye. While compications with my rheumatoid arthritis (RA) did not allow that sight to last, his surgeries did give me something else. Through resurfacing the eyelid, he removed the constant pain from my right eye. And last week, he did the same with my left.

Surgeries are never fun. I currently have a “contour bandage lens” in my left eye to keep the stitches from scratching my cornea, and I’m on several different medications for after-surgery pain and inflammation. But when I woke up this morning, something miraculous happened…

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Words really cannot describe how incredible it was this morning to open my eyes and simply see. No pain, no fear, no fatigue from the fear of pain. Just sunlight creeping into my room, wishing me a happy morning…

And a very good morning to all of you, dear readers! Keep your warm memories snuggled near to you this winter, and the happy sunshine under your wings!

Solstice Solitude

English: Tuileries Palace under the Second Emp...

English: Tuileries Palace under the Second Empire. Destroyed by fire in 1871. Français : Palais des Tuileries sous le Second Empire. Détruite par un incendie en 1871. (Photo credit: Wikipedia)

Last week I had the opportunity to view the The Art of the Louvre‘s Tuileries Garden on display at the High Museum. The exhibit was beautiful–the models astounding, the statues intricate, the paintings lovely. One painting held my eye far longer than the others. I have searched for the image online, but been unable to find it. “Rainy Day in the Tuileries” by Horton was the only note I took down.

Yet I remember the pinkish hues in the pooling water, amidst a sea of bare trees. The painting seemed surely to depict the dead of winter, a whitish backdrop littered with naked trunks and twisted limbs. One lone figure walked through the scene, with an umbrella as his only refuge.

I stood perhaps three full minutes, examining the umbrella. Why visit in the rain? I wondered. Why alone?

The answers were potentially many, but I settled on imagining myself the wanderer. No stranger to rain, I grew up embracing cold, dreary days. Winter found its home in my heart and my stories long before my knees screamed against the dropping temperature.

There is something beautiful about the rain: the way it washes over the earth, sending mud and grease down the gutters with the runoff; the way it patters on the roof, inviting sleep and warm mugs of tea; the way it cuts through to the skin, sinking into clothes and bones and guiding our thoughts to the pleasure of warmth. There is something gracious, too, in the snow: the beauty blanketing everything, the silence enveloping the air, the hibernation inviting renewal and rebirth.

These days, rain and winter have a great many other meanings. The cold makes my joints stiff. The heat in the house makes my eyes dry. There is the ever-present worry of cold and flu and slipping on ice. But something about this painting dissolved all that, if even for a moment. This lone figure was walking through one of the most beautiful gardens in the world. Although surrounded by rain and bare trees, how gloriously peaceful his walk must have been.

A decided extrovert, I often forget the tranquility of being alone. Sometimes, hiking in the woods or wandering a sparse art gallery are the times I feel the most alive, and the least lonely. There is so much beauty to be found, even in the gray days, and so much solace waiting to be discovered in solitude. In a world of constant connection and a consistent push to be overjoyed, we might miss those beautiful moments of separation. We might not appreciate the twinges of sadness, of regret, of doubt.

As Winter Solstice approaches, perhaps now is the best time to reflect and recollect in the sense that, as nature does each winter, we again collect the blossomings and blemishes of the year before. Perhaps now is the time to relish every moment: the cold, the gray, the bright, the fierce. Now is the time to hold it all close before letting it go, relinquishing it to the past so we may build upon its ashes.

This Solstice, find comfort in moments of solitude. Find silver in the gray sky. Appreciate each building block that has brought you forth, then forge on through your garden, umbrella in hand.

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Fighting Fear, Fighting Frustration, Finding the Silver Lining

I finally made it home today, one week after going to the doctor to check on a fever. Funny how a checkup can turn into a brief hospital stay. Not so funny how a few nights in the hospital can bring back so many memories and ignite so much fear and frustration.

Last Sunday, I woke up at 6am with a fever of 102. I texted my mom, and at her behest took some acetaminophen. Luckily, this kept the fever down and manageable for most of the day, but when I awoke the next morning with a fever of 99.5, I knew it was time to get it checked out. If I were someone else–someone without a crazy medical history, someone who didn’t owe my daily comfort to an immunosuppressant–I probably would have ignored the fever and just spent a second day in bed. How bad can a fever be, after all? Apparently, it can be an indicator of something pretty serious.

I drove the hour to my GP (because, let’s face it, once you find a doctor you like it’s really hard to switch to a new one when you relocate). She ordered several tests and cultures, so I decided to stay the evening with my grandparents, who live close by. That evening, I was still feverish, but I enjoyed the comforts of staying with my Nana, including her delicious cornbread. Normally, I try to stay gluten-free, but I have a particular weakness for Southern cornbread, especially when I feel ill. It turned out to be a good thing that I stayed the night. The next morning my doctor wanted to retest my white blood cell count. When it came back just as low as the day before, she requested I admit myself to the hospital.

A Quick Note on WBC Count

Your blood is made up of several different kinds of cells. Your red blood cells carry oxygen and nutrients to your body. Your platelets help patch you up when your body is cut by coagulating in the wound. And your white blood cells (WBCs) help fight off infection. Your WBCs are further broken down into types: some WBCs fight infection while others carry the infected cells to the infection-fighters. The carrier WBCs are called neutrophils, and a low neutrophil count is called neutropoenia., usually an early indicator of leukemia or an anomaly caused by certain medications.

My doctors explained that they normally like to see neutrophil counts above at least 1,500. Mine was under 400. And so I was admitted to the hospital…

After the Hospital – Deja Vu

I was admitted Tuesday and released Saturday. My fever diminished, and my white blood cell count rose enough to pull me out of neutropoenia. I thought that would all make me feel better, but somehow I’ve found myself much more uneasy than expected. Physically, I feel mostly fine. A little more tired than normal, but fine overall. Emotionally, however… I have seen much happier days.

Being in the hospital, even for a short time, reminded me of the vulnerable, fragile feeling of suddenly not having control over my everyday actions. It brought back memories of wanting so desperately to escape, to wake up and have the nightmare be over. The loop of late-night IV drips and the constant stream of different doctors and nurses rushed into my new reality. The world I had built up that felt safe was suddenly infiltrated by the horrors of a past I’d tried so diligently to forget. In a matter of days, my new normal had crashed into my all-too-familiar, vulnerable past.

I thought that fragile feeling would disappear when I left the hospital, but then I stayed the rest of the weekend at my grandparents’ home, the place where I had spent months recovering the last time my life had flipped on its head. I felt fine physically, but I was irritable and pensive. The fear of losing the life I’d built–again–created a hard wall of fear and frustration in front of my face before I could even realize it was happening. Thankfully, my family saw it first. They let my harsh comments go and explained away my frustration with every little thing. It’s amazing how much you can need a hug without realizing it.

When I drove home today, I found myself weeping over the simplest songs. I found frustration and jealousy at a friend’s Facebook event invite because she knew I couldn’t attend. Logically, I knew she was reaching out and being friendly. But emotionally, all I could think was, “Screw you and your simple life. How can you rub it in my face how completely over my life is? How can you treat me as though none of what I’m going through matters?”

It was a ridiculous reaction to a perfectly kind invitation, but I couldn’t push the feelings of anger and frustration away. It wasn’t until later, when I was talking on the phone to my mom, that the real reasons for my frustration poured out of me in a stream of tears and words.

Admitting My Frustration, Facing My Fears

When I was growing up, I was always reminded how lucky I was to have my arthritis in remission. As in, my mother constantly reminded me. At track events or cheerleading competitions, when I took the field with Dance Line or took the stage for Drama Club, my mother would gently remind me of how proud she was of my accomplishments–and how grateful she was that I could enjoy them. Because my juvenile rheumatoid arthritis had gone into remission at age 4, I didn’t quite understand what she meant. It wasn’t until living with RA these past six years that I finally understood that gratefulness.

Knowing what I know now about sitting in doctors offices, scheduling everything around prescriptions and infusions, and spending time in hospitals, I want to tell the people around me to be grateful every day. I want to scream at people to make better life decisions and to take better care of their bodies and their souls. I want to remind myself every day to take better care of myself. At the end of the day, the person I am really frustrated with is myself. And my parents. And God.

If I’m being perfectly honest, I do my best to live my life as carelessly as others my age. The minute I could afford to dye my hair again, I went bright red. The second I wasn’t on a medication that reacted negatively to alcohol, I ordered a gin and tonic. The moment it seemed like I had a new normal that didn’t involve 5 different eyedrops and 3 surgeries a year, I stayed out late and went out on dates. I lived life the way I saw other people my age living. And when I couldn’t hold as much alcohol as I could before getting sick, I blamed my medication. When I couldn’t stay out late because I got tired by midnight, I pretended I was fine. When I realized I really didn’t feel like drinking and staying out late anymore, I took up the role of Designated Driver and acted like I hadn’t changed. But I had.

I’m 25. I have RA. I get tired around 11pm. I don’t like being drunk. I prefer board games to bar-hopping. And I hate that it makes me different from my peers. I hate that my wrists hurt when I don’t eat well. I hate that getting a fever puts me into the hospital for a week. I hate that my schedule revolves first around doctor and infusion appointments before anything else. I hate that I have to make sure everything is a certain level of clean. I hate that I have to do about 5 extra things than most people before I leave the house. I hate that I have so many little things to remember that I can’t seem to remember anything anymore. I hate that I have an infection that caused me to get sick last week, but I won’t know for another week or more what it is. I hate the fear that it’s something even more life-changing that what I already know I have. I hate that none of my close friends seem to understand how vulnerable and frustrated all this makes me feel. I hate that I don’t feel like it’s fair to them to tell them how I feel. I hate… so much!

I’m so jealous of people who can get up in the morning and just walk out the door. I’m jealous of people who don’t take pills every day. I’m jealous of people who haven’t had to visit a doctor in years. I’m jealous of people who don’t live in fear of what else might go wrong. I’m terrified that something else will go wrong. Something else always seems to go wrong. There it is: my frustration, my jealousy, my FEAR. Because what it all comes down to is fear. Fear that I can’t deal with whatever else gets thrown my way. Fear that I won’t have the things I always wanted. Fear that I will be alone in enduring whatever comes next.

The Silver Lining

When I recognize these frustrations and these fears, life is just as quick to show me how incredibly fortunate I am. I live in America. I have easy access to doctors who can help. With medication, I live a relatively normal life compared to most Americans. Compared to most of the world, however, my life is charmed. I am grateful to have medications to remember each morning. I am grateful to get out of bed each day and get ready for a job that I’ve had for more than 3 years. I am grateful that this fall I will have the opportunity to study what I love. I am so grateful for the things that I have, the life that I lead, and most importantly the amazing people who make it all worth it. Like my grandmother told me yesterday, I might never have all the things that I want in life, but I will never be alone. I have my family and friends to thank for that. In a way, I have myself to thank for that. And my parents who helped me to create the person I am and the life that I have. I especially have whatever God there is to thank for that.

I was reminded by a Kutless song today that “You have to face the clouds to find the silver lining.” My family, my friends, and all of you are my silver lining. Hold people close, open up to those around you, and don’t be afraid to talk to a stranger and make a new friend. Life seems so much less frustrating when you’re surrounded by love.

God bless.