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!

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.

Putting the Pieces Together

prednisoneWe don’t talk enough about the added effects of chronic health problems. We’ll talk about what medications help. We might mention their physical side effects. But how often do we talk about how these things affect our daily lives? It’s almost as if being alive is enough. But in some ways it really isn’t.

Being alive and living are not mutually inclusive. Doctors and even society can sometimes fail to see the difference. Even worse, they can misunderstand how certain treatments that help us be more comfortable in one way might affect our ability to function well in another way. For example, a person on chemotherapy might be able to move more easily, but they potentially do so at the cost of constantly feeling sick. Different patients need different care, something that our entire healthcare system – insurance, legislators, and even doctors – seems to have forgotten.

I was reminded today about the importance of finding the right care, and especially of finding the right doctors. I was also reminded of how hard it can be sometimes to see the bigger picture of health when we’re focused on the daily minutiae. It can be difficult to piece together the real problem when we don’t think about our bodies as a whole puzzle.

Walking into my rheumatologist‘s office this morning, I went through the list in my head of things I needed to tell Anna, his PA. Headaches. Stiff hips in yoga class. Some trouble sleeping. Nothing much seemed out of the ordinary as far as my arthritis went. I followed the nurse back to a patient room and answered the usual questions. No new symptoms. No illnesses since I was last in. No changes in my medication.

Wait, I remembered as she listed the prescriptions on file. I’m still on prednisone from my surgery in May. But the moment was lost. She’d already moved on to the next question. That’s okay, I told myself. It’s not that big a deal, and I’ll be tapering off from it next week.

The nurse left the room, and I quietly scrolled through my Twitter feed as I waited. Once Anna stepped in, we jumped quickly through the niceties as she asked about school and how my eye was doing since the surgery.

I’ve recently been lucky with doctors. I hear complaints all the time from friends about poor bedside manner and the awkward moments of patient-physician interaction. The two physicians I see most, though, are some of my favorite people. And their staff are also fantastic. The first thing my rheumatologist ever said to me was, “Girl, you’ve been through some crazy shit.” I felt comfortable there. And after three years, talking with Anna was easy. Her probing questions about my physical and emotional health felt more like a concerned friend than a discerning doctor. I spouted off the list I’d made in the waiting room. But that’s the thing about good doctors: they know what to ask and when to listen.

“Is there anything else?” She tilted her head toward me, waiting.

I hesitated. My other issues seemed unrelated, and probably just caused by stress. But I decided to tell her anyway.

In the past, I’ve had problems with obsessive-compulsive disorder. I have been treated at various points in my life, and I’ve learned to manage it on my own. Most of the time I have no trouble with it at all. But over the past month I had been noticing OCD symptoms. Anxiety, obsessive thoughts over simple conversations, negative listless thoughts throughout the day, trouble shutting down my brain to go to sleep at night. I figured it was related to stress from overworking myself at school.

But as I spoke, I started to pick up the pieces I’d laid before her and put them together. It wasn’t just that my mind whirred as I tried to sleep. There was also a listless energy that made lying still uncomfortable to the point of being almost unbearable at times.

“Prednisone,” I told her. “I’ve been on prednisone since the surgery. I didn’t think about it until just now. Those are all the same symptoms I had the last time I was on it.”

She nodded and explained those those were all symptoms she’d heard before. Even the anxious thoughts. It was funny to hear her say that, considering my previous doctors had told me trouble sleeping was the only side effect that could be connected to the medication. three years ago, I’d spent over a year begging my doctors to let me stop using prednisone. They couldn’t believe a corticosteroid would have such a strong emotional reaction in a young woman. And even if it did, they argued, the benefits outweighed the costs. I had quite disagreed.

Her words brought a smile to my face. It was like a tiny cloud lifted from around my head. For a month I’d been having headaches and feeling downright crummy. But it had a reason now – one that didn’t involve me having to reassess my lifestyle or think about adding yet another prescription to my list. She told me that a few weeks to a month after stopping the prednisone I should feel normal again.

So often we get lost among the piles of puzzle pieces that we fail to see how they fit together. Writing down your symptoms or saying them out loud to another person – even when they seem unrelated – may be exactly what’s needed to figure out what’s wrong. Or what’s missing. As I’ve said several times in this blog, I am a strong advocate for keeping a journal to catalog both your physical and emotional experiences and of trying on several doctors until you find the one that best fits your needs.

Know your self. Trust your body. Advocate for your best life.

Dealing With (Insurance) Denial

Every year seems to start up a new game with my health insurance company. If they do not send out a new statement of benefits, I have to track it down on their website or call in to request a copy. Depending upon the new government regulations, new treatments (finally) considered scientifically viable, and the general shifts of the medical industry, premiums will go up and coverage will change.

This year, I seem to have hit nearly every snag possible with my health insurance. Increased premiums, claim denials based on semantics, lack of interdepartmental communication freezing appeals, misfiled paperwork, and even dropped coverage without notice during a hospital stay,,, I feel as though I have seen it all! And I’m not the only one.

So many friends have complained about the state of healthcare in the United States, and often the complaints center around the functionality (or lack thereof) of the health insurance industry. While I have not extensively studied healthcare solutions, I do understand the need for reform. More importantly, I understand the need for more personal assistance.

From the perspective of the individual, health insurance and the companies who provide it can be daunting. Speaking to a customer service representative does not guarantee they can explain what is on your account. Nor does speaking with your doctor’s billing department guarantee they know what is on your insurance account. Just today, I spent quite a bit of time relaying information between my doctor’s office and my insurance company, only to discover that neither side had a clear idea of what the insurance filers were looking for on my claim and appeal. Yet that’s a step farther from my previous insurance company who refused to speak with me because my policy was through an employer!

The institutional and bureaucratic failings of health insurance companies appear vast. While the fight in Congress continues, the larger reforms are not currently helping the individual make sense of it all. They are not helping me understand my company, nor are they helping me submit claims. More importantly, they are not offering me peace of mind each night as I go to sleep with a five-digit number gnawing at the back of my brain because my mainstream rheumatoid arthritis treatment was not deemed “medically necessary.” So that got me thinking…

What can I do next?

To a big insurance company, I am just another drain of money. To my doctors, I am a patient who cannot pay, and sympathy does not make up for thousands of dollars owed. To my family, I am a loved one they wish they could help. And to myself, I am one big, jumbled mess!

In order to keep from curling up in a ball and wasting away, I have found that even the biggest messes are manageable with a plan. So I have set out a few potential ways to get help when your current insurance company is just not following through.

Plan B (Or C, or D…): What options do you have when your current insurance falls through?

  1. Go up the ladder: Customer service representatives can only see and understand so much about your account. Ask to speak with a supervisor, and be polite! I cannot tell you how much more smoothly these conversations go when you are calm and cordial. Remember, they are there to help, and usually they will try to help as much as they can.
  2. Talk with your doctor/pharmaceutical company: Your doctor’s staff will often know a few ways to get financial assistance. For example, several medications have financing programs to help people in need. The RA treatment I receive, Remicade, has a patient rebate program called RemiStart that helps lower the cost of treatments for those who have insurance willing to pay a portion of the cost. Speak up, ask questions, and figure out if there is a financial assistance program you can use.
  3. Shop around: Maybe the plan you have isn’t the best one for you. Go online or speak with customer service to request a copy of your benefits package. Talk to your friends about their coverage, discuss plans with your HR department, and even talk to the billing department at your doctor’s office to see if they have any suggestions. Health insurance policies are not one-size-fits-all. Talking about your personal predicament with someone else who better understands the plans can be a great help.
  4. Consider getting secondary insurance: Even when you have a primary provider who will pay some of your medical bills, the out-of-pocket expenses can still be painful. The trade-off is another monthly insurance fee, but the benefits of secondary insurance may outweigh that. Search online or ask friends about their plans to see if secondary insurance at another company might be a better option.
  5. Raise funds through crowdsourcingThis is a newer option I have seen popping up on social media sites and email chains. Companies like Give Forward allow you to create a page where friends, family, and strangers can donate to your cause or offer words of encouragement. These sites do take a processing fee from each donation, but might be an option to help collect from your friends and family who want to give.
  6. Reach out to loved ones for emotional support: This one just might be the most important. We often get so bogged down in the cost of care that we forget to appreciate the care we have. Family and friends can help us carry those burdens and remind us that the rough patches make for stronger relationships and greater life fulfillment.

At the end of the day, dealing with insurance companies is frustrating, and it gets worse each time they deny a claim. So take a step back, look at your options, and make a plan.

Please feel free to leave insurance tips in the comments section!

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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.