My POTS Story

An alternative title for this post could be "How a Parking Lot and Some Goats Led Me to a POTS Diagnosis."

For over a year-and-a-half, I had been dealing with a variety of vague and sometimes debilitating symptoms that I wrote off as fatigue, side effects from medications, or incorrect dosing of my thyroid medication.  During June and July of this year, I underwent a variety of tests that led to a definitive diagnosis of POTS: Postural Orthostatic Tachycardia Syndrome.  My symptoms seemed to have awakened one day and progressively gotten worse with time.  When I reflect back on this year and last, I can recall particular days where my illness was becoming more and more evident.  I am thankful that a diagnosis came quickly.  And I am thankful for my parking lot at work and some goats at a local barn for leading me in the direction of a fairly fast diagnosis.

My first memories of POTS symptoms started early last year.  In 2016, I had decided to begin taking antidepressants for episodic hormone-related depression.  I tried a handful of medications at the end of that year, and finally began the medication I am currently taking at the beginning of 2017.  With that new medication came some nausea and appetite loss.  Some mornings I would feel sick to my stomach like I was going to vomit, and there were days I actually did vomit.  Around this same time, I noticed that I was experiencing increasing pain in my hands and wrists, particularly with gripping or over-use.  I found that if I minimized time on my iPhone, it seemed to reduce the pain.

Moving towards March, I began to experience debilitating fatigue.  I have to get iron infusions periodically because I am chronically anemic and my body doesn't absorb oral iron.  I thought that perhaps my iron levels were running low again.  What I came to find out is that my body had decided to suddenly stop processing my thyroid medication--which is extremely rare and had only ever happened in one other of my endocrinologist's patients.  For a person without a thyroid, hormone replacement medication is necessary in order to live.  My blood labs reflected a total lack of thyroid functioning in my body, which explained the debilitating fatigue.  Around this same time, my morning vomiting became worse, to the point that I was in my doctor's office one morning for an appointment and they had to give me a B6 injection because I couldn't stop throwing up.

Looking back, I think that March of 2017 is probably when my autonomic nervous system broke--the beginning of my POTS.  As the year went on, I continued to face nausea and vomiting, as well as the migraines that had become the norm over the past year or so.  I only needed to use five sick days during 2017, but I did need to go to work late or leave early at times due to my symptoms.  Towards the end of the year around November, I found that it had become increasingly difficult for me to wake up in the morning.  By that time, my iron and thyroid levels were in appropriate ranges, but I found that I would be running late to work every day.  Because I already started work later that the majority of campus staff, I had to park in a lot that was about a half-mile from my department.  In the morning, I would rush to my building and arrive to my office out of breath, sweating profusely, dizzy, nauseous, and feeling like I was going to cry.  I also began to notice how difficult it was for me to walk up the stairs in the building to my office, as I experienced heavy legs and a racing heart.  I blamed anxiety and depression.

Because of my challenges arriving to work on time and needing to park so far away from my department, I decided to pursue disability-related accommodations through our HR department.  I was approved for an even later start time so that I could walk to my building without having to rush, and also an extended lunch break so that I would have enough time to walk to my car, go home for lunch, return to campus after lunch, and walk back to my building.  The walking felt extremely challenging to me, but I didn't entirely know why.  I was a mostly healthy 31-year-old woman that should be able to walk the equivalent of two laps around a track, but why did walking make me feel so ill?

The accommodations coordinator with HR encouraged me to explore a disability parking placard with a physician.  I contacted my endocrinologist and was told that they have an office policy against approving disability placards.  I avoided talking about my need with my psychiatrist because I was having a hard time finding a reason why I needed assistance with walking.  My pain and exhaustion and weakness felt so real, yet there wasn't a clear explanation for my symptoms.  They seemed to be getting worse.  In fact, I remember being on the verge of tears on Christmas morning in 2017 while my family was opening presents because I felt so unwell.

Early in 2018 marks another moment in time that I can now look back on and recognize the increasing severity of my condition.  In early January, I felt like I had come down with the flu.  I felt more run-down than I ever have in my life, and that is a significant statement for someone with multiple chronic conditions that cause debilitating fatigue.  My glands felt swollen, I felt weak, my body hurt, my cognition suffered, I struggled to participate in work meetings.  The thing was, I was still able to go to work and appear fully functional, but internally I felt like I was slowly dying.  My endocrinologist suggested I might have the flu without a fever.

My symptoms started to resolve a bit the following month, and I discovered that I had been getting cross-contaminated with gluten and possibly dairy from a local pizza place.  I assumed that the symptoms I experienced for all of January were the result of my autoimmune response to gluten and dairy, and I thought that avoiding eating out would help my symptoms to resolve.  From March through April, I used three sick days at work, but in May is when my body finally said, "Enough."

I was at work on a Wednesday, three days before my birthday, and beginning to feel like I had during January.  I felt dizzy, feverish, sore, and unable to concentrate at work.  I called my fiancé in tears because I wasn't sure I was going to be able to drive myself home.  I stayed on the phone with him until I did get home, and he rushed over to pick me up to take me to urgent care.  The doctor I met with at urgent care tested me for strep and mono, but both came back negative.  She told me that I likely had some kind of virus and that I should stay home from work until Monday.  I e-mailed my supervisor and explained that I would need to take some time off, and that I wanted to discuss modifying my student caseload because I thought work-related stress might be negatively affecting my health.

I slept for the better part of the next two days, and on Saturday, my birthday, my fiancé and I went to a local farm so that I could feed goats.  I still felt fatigued, but improving, and knew I could handle a brief excursion.  However, what I didn't anticipate was that I wouldn't be able to move my dominant wrist by the end of the afternoon.  We had gotten groceries the previous day from Costco, so I thought perhaps I had injured myself while lifting something.  However, in the days that followed my pain continued to get worse rather than better.  I began to experience numbness and tingling from my hands up to my shoulders, and there were days at work that I couldn't do anything with my hands during my last two hours in the office because I was in excruciating pain.

At this point, I had continued to put off pursuing a disability parking placard because I couldn't mentally justify my need for it, even though walking some distances had become a challenge.  I also noticed increasing pain in my legs in the evenings after a walking-heavy day.  It felt like my ankles, knees, and quads were on fire.  I would cry after work when I got home because the pain was so unbearable.  So, between my leg pain and hand pain, I finally sought to find a primary care doctor in town.  At my first appointment with the new doctor, I broke down into tears describing to her how much pain I was in from walking and how ill I felt when I arrived to my office after the half-mile trek.  Without my asking, she immediately said she would approve me for a disability parking permit.

In the following weeks, I was given an ultrasound of the veins in my legs and arms and referrals to an orthopedic surgeon and a neurologist.  The orthopedic surgeon ordered an x-ray of my hands, which showed no osteoarthritis or evidence of anything abnormal.  The neurologist performed a nerve conduction test to check for carpal tunnel, but my nerves were functioning normally.  I described my symptoms to the neurologist's physician's assistant, and when she and I and the neurologist were meeting to discuss a course of action, the physician's assistant asked me to stand up and then attached the blood pressure cuff to my arm.  She shot the doctor a knowing look and then said to me, "You have POTS."  Apparently, when I had first come into their office, my blood pressure and heart rate were in perfectly normal ranges.  As soon as I stood up, my blood pressure remained about the same but my heart rate shot up 37 beats per minute.  The neurologist said they would continue with standard POTS testing just to be certain, but that it meant at some point my autonomic nervous system broke and that there would not be a way to fix it.  He also said he suspected fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), but that further testing would be needed.  I was referred to a cardiologist and pulmonologist and ordered a variety of blood labs and an MRI of my cervical spine.

Testing with the cardiologist included an EKG, echocardiogram (heart ultrasound), Holter monitor, and tilt table.  The testing led to a definitive diagnosis of POTS.  The pulmonologist will be performing a sleep study, and he will be exploring sleep apnea, periodic limb movement disorder (PLMD), and chronic fatigue.  The MRI revealed a herniated disc in my cervical spine at the C5/C6 vertebrae, which has likely been the cause of at least some of my upper-body pain.  As for the POTS, that at least in part explains the pain in my lower extremities.  Essentially, my body has challenges with gravity, and so when I move into a sitting or standing position, blood pools in my legs and doesn't reach my brain quickly enough.  In response, my heart rate elevates significantly in order to get the blood moving as quickly as a possible.  When I am doing normal, non-strenuous activities, my heart rate might be the same as it would be for an adult of my same body composition doing vigorous aerobic exercise.  Essentially, my body is in an all-day workout.  At the end of the day, I find that my lower limbs tend to be uncomfortably hot and swollen.

As has been the case for the entirety of 2018, my symptoms seem to be progressively getting worse.  I have had three instances of near-fainting, one of which included a visit to the emergency room for IV fluids.  My body is happiest when it is laying down.  It struggles the most when I am standing for too long, walking for too long, in heat, walking upstairs, rushing, dehydrated, on an empty stomach, or not laying down periodically.  My doctor has asked me to increase my electrolyte and water consumption and wear compression garments.  I will be starting POTS medications in a few weeks.

I wanted to capture the challenges of the past year-and-a-half so I don't forget what my lowest POTS moments have felt like.  I am hopeful that with treatment there are better days to come.  But I also want this to serve as a reminder that it can be dangerous to write off symptoms.  I didn't realize what I was doing to my body until I was given a label.  Blood deprivation of the brain is serious.  I am so grateful that the physician's assistant had the wherewithal to check my standing heart rate.  My constellation of symptoms seems unrelated and random; they could have easily been the result of my pre-existing conditions and side effects from medications.  I feel validated.  My body is sick.  There are treatment options.  There is hope for the future.

My primary care doctor suspects that I may have an underlying connective tissue disorder, so more testing is on the horizon.  We also both suspect I may have mast cell activation disorder (MCAD), which would explain my frequent hives, copious food sensitivities, and general system-wide sensitivity to every environment, which has been getting progressively worse.  There are treatment options to help regulate my autoimmune disease, manage my migraines, and promote hormone balance.  I am moving towards healing.  But, that doesn't diminish the fact that these past many months have been hard and exhausting and at times I didn't think I could push forward.  I know many people wait years for accurate diagnoses.  I know I should count myself lucky to have doctors who believe me and are doing everything they can to help me.  It has taken a certain level of bravery to entrust myself to this process, and there are moments that I wish I could trade in my body for a different one.

But, the reality is that I struggle daily with chronic illness and that makes me who I am.  I do the work that I do with my students because of who I am.  Other people might be diagnosed with these illnesses and then not choose to do this work.  For me, I willingly accept these diagnoses because with them I choose to do the work that I do.  And it makes it okay to face these challenges because they are what allow me to help my students best.  And so I say to all of this, yes.  Yes.  It's okay.  This is okay.  I'm okay.  I'm okay because I can help others because of this.  I'm okay because I can better understand others because of this.  I want to help and understand.  I want to affect positive change for people.  And if that means being on the front lines of the chronic illness battle, I give my yes.  Yes, yes, yes.  I take this cup.  This is not easy, but I will let it be my truth and path and purpose.

Accepting Your Whole-Self

I found myself coming home in a bad mood for most of the week.  My supervisor tells me it's due to some unusual planetary alignment that's going on right now.  I blame my ongoing self-esteem issues.  And perhaps the fact that my job keeps me so distracted and so busy and from living out my innate MBTI preferences that I come home from work feeling like I've been living as a false self.  I have also been thinking more and more about relationships lately, and the fact that I would really like to get married--or at least have a romantic partner to share my heart and life with.

Getting older sometimes feels uncomfortable and sad and unsatisfying.  So many of my friends are starting families, advanced on their career paths, making their marks on the world.  Social media can be so dangerous because I find myself stalking contacts near and far, comparing my circumstances to theirs.  It's easy for me to momentarily forget my chronic illnesses and struggles and cancer in those few seconds of comparison that lead to a snowballing of self-doubt and self-deprecation.  I read somewhere this week that we should get off of social media because it's unfair for us to compare our own behind-the-scenes to a highlight reel of the people around us.

I've been feeling better the past few months.  Meaning, I've been taking better care of myself.  Meaning, I've had more energy to do my hair and make an effort with my outfits.  I've been trying to treat myself with much grace, not pushing myself too hard or expecting too much of myself.  I am just grateful to be alive and cancer-free and feeling mostly happy, and I don't want to upset what has become a semblance of balance.

At the same time, I realize that the person I present to the world is the person I present to the world.  Not a deep statement, I know, but what I mean is that people don't know about my inward struggles at first meeting.  All they see is my shell, a shell that often reflects the half-person that I often feel that I am.  A half-person because of fatigue, exhaustion, pain, depression, and insecurity.  A half-person because my energy is expended trying to support myself financially while dealing with constant emotional upheavals and health issues.  A half-person because I often have to put hopes and dreams on hold as I attempt to make it in there here-and-now.  A half-person because I spend the workweek functioning out of my inferior MBTI function.

As I often do, last night I turned to Google for advice.  It's become a sort of Magic 8 Ball for me as I navigate a life of ill-health.  When I did a search for "come home feeling bad about myself," the first search result was for an article from Tiny Buddha called "5 Tips to Stop Making Comparisons and Feeling Bad About Yourself."  Sara Davies' 5 tips are:

1. Appreciate what you do have.
2. It's not a fair game.
3. Things aren't always what they seem.
4. If you must compare, compare to you.
5. Accept what you can't change and change what you can't accept.

The third hit from my Google search was for an article on Psychology Today entitled "Social Media Makes Me Feel Bad About Myself."  I do largely blame social networking for providing the ability to compare and assess ourselves in a matter of only a few seconds.  If we slowed down to thoughtfully consider our self-talk in those few seconds, I think we would be both ashamed and surprised.  I'm guessing that for most of us, the self-talk involves a lot of negativity, either because we envy the people around us, or because we make ourselves feel better at what others lack or where others are at in life.

Aside from social networking, I also find that having young co-workers has unearthed some personal feelings of self-doubt and comparison.  Mostly because being around them immediately propels me back a decade, to a time before diagnoses and cancer and living a strict life.  I am reminded of the freedom I had back then, the sense of choice and opportunity.  It really felt like the world was my oyster, and I looked forward to travel and relationships and adventures.  I was naturally self-confident, and I enjoyed being involved in social groups, discovering new cultures around the world, and meeting potential romantic partners.

As I've gotten older, my social groups have mostly disappeared, I haven't been able to travel, and romance has not been a top priority.  Now that I'm finally feeling interested in having a boyfriend and possibly getting married at some point, I realize that I feel as though I lost an entire decade.  Illness was my boyfriend.  Medical treatments were my adventures.  So, not only do my young co-workers remind me of what felt like a simpler time, but they also provide me with the opportunity to live the years that I feel like I lost.  And, of course this is somewhat problematic, because I really can never get those years back.  And based on brain development and life experience, I am further along than them in almost every way.  But it seems as though my circumstances are more akin to theirs than to the circumstances of people my own age.  I am mentally and emotionally more developed, yet the external reality of my life is almost exactly the same as theirs.

And this is what frightens me about the possibility of ever meeting a partner.  How will he perceive me when he meets me?  Will he judge me as the half-self I present to the world?  How will he know what I've been through and why I am the way I am?  Will he understand my circumstances?  Am I in a place to meet someone?  Can I be emotionally available to someone?  Do I need to lose weight to meet someone?  Do I need to be financially self-sufficient to be with someone?  Am I pretty?  Am I thin?

I know that I have a lot to offer someone on emotional and intellectual levels, but I fear that my circumstances and present-day realities will prevent me from finding love.  But, is that a legitimate concern or just my own insecurity?  I realize that opportunities to meet people my age in this area are few, but even if I did go somewhere else, how and where would I meet someone?  The older I get, the less and less likely it seems that those questions can be answered.  I know that God can work beyond my comprehension or planning, but I also realize the danger of expecting Him to do work while I choose not to be proactive.

I think for me the biggest hurdle is my own self-esteem battle, and for that I know I probably need to return to counseling.  Chronic illness seems to infiltrate every component of life, and perhaps most strongly affects a person's self-perception.  It's hard not to see myself as damaged goods or high maintenance or too much for someone to want to deal with.  I keep thinking, "I'll wait until I'm thinner.  I'll wait until my cute clothes fit.  I'll wait until my upset stomach issues are resolved.  I'll wait until I'm on my own.  I'll wait until I have a real job.  I'll wait until..."

But if I keep waiting, I fear I'll look back on most of my life as years lost.  I don't want to perpetually feel ostracized from my own age group.  I don't want to have to revert back to a time of lesser maturity in order to feel comfortable with my own life.  I want to learn to move forward in my life at my age in a way that accepts my experiences and circumstances.  I want to have confidence in what I have to offer the world and a potential partner.  I don't want to feel like I have to fix myself, but I want to learn to accept myself as I am in the here-and-now.  I want to extend grace and love to myself always.  I want to trust God, and also see myself as He sees me.  I don't want to look at my life as a mistake or disappointment, but I want to dwell on the ways in which my struggles have shaped the person I am.  I want to be un-apologetically me.  And I don't want to rate myself according to the Joneses.

I'm going to try to be more conscious of my self-talk.  I'm going to try to stay away from social media stalking.  I'm going to try to focus on a more meaningful relationship with God.  I'm going to try to live as a whole-self, the self that He created me to be.  May He give me self-compassion in the process.

The Imagined Life vs. Real Life

I've struggled to live in the present for probably half my life.  Sometime during high school, as childhood came to an end and I propelled towards adulthood, all that demanded my attention seemed to exist in the future: test scores, grades, college applications, a bachelor's degree, a first job.  We were trained to do everything for the sake of what would eventually come, and so I think in some ways we were conditioned not to live in the moment, but instead to always be moving forward and looking to the next thing, the bigger thing, the better thing.

This week I've experienced a tumult of emotions, which I blame in large part on a mix-up at my local pharmacy.  I was unknowingly given the wrong thyroid medication last Monday, and for most of the week I experienced severe mood swings; they caused such a marked change in my disposition that I eventually had the intuitive sense to check the imprint on my hormone tablets, and thus uncovered the error.  It was emotionally exhausting, to say the least, but in combination with beginning to read Steven Pressfield's The War of Art last weekend, I've had some time to thoughtfully consider where I am in life and the direction in which I am and/or hope to be moving.

For the past several years, living an imagined life has been my default.  I think I've encountered so much pain during this second half of my life that I cope by dwelling in the land of imagination.  INFJs are naturally future-focused as it is, so I'm likely hard-wired to use daydreams as a sort of coping mechanism.  I've constructed fantasies about where I'll live, what I'll do, what I'll have, who I'll be with.  I've created imaginary depth in relationships with people I actually know, and dreamed of pretend scenarios that some part of me hoped would come true, if only to take me away from the life that I actually know.

Clearly, using imagination as a means of escape just signals a larger issue of not wanting to deal with my reality, the here-and-now.  Perhaps my imagination has bred a sort of hope that has made the pain of disease and illness bearable.  If that's the case, I can't be too hard on myself for finding a way of moving forward in what have been the most difficult years of my life.  At the same time, living so much in fantasy not only keeps us from progressing, but prevents us from appreciating the people and circumstances that exist in a given moment in time and space.  Incidentally, focusing on an imagined future has actually prevented me from advancing in life.  Now that I think about it, I suppose that I haven't wanted to move forward, as I'm sure that in many ways I maintain a fear about what is to come.  Will there be more pain?  Disappointment?  Suffering?  Disease?  Hopes squashed?  Imagining a future has given me a sense of control over the terrifying unknown.

What is to be done about chronic disappointment?  Normally I would say that a person has too many expectations.  I thought it was fair for a person to assume s/he would experience good health, true love, and vocational fulfillment, but now I realize that any expectation is already too many.  We can't know what life will bring us, what will be our assigned portion and cup.  I have handed my security over to dreams and fantasies, when I should have been entrusting my security to God.  Isn't it like us to trust our own imaginations over the sovereignty and loving-kindness of a divine and all-good Creator?  I find myself proving over and over that I lack trust and faith in God.  Fortunately, He continues to be good and loving and all-knowing whether or not I believe Him to be so.

I often say that I wish I trusted Him more.  And I do.  But more than that, I think I wish I knew Him more.  Because if I truly knew Him, I don't think I'd be afraid of Him.  Because I don't think I'm as afraid of entrusting my future to someone else as much as I am entrusting it to God.  Because when I entrust my future to God, it feels like I am inviting more pain and disappointment and suffering and disease and squashed hopes.  I know I'm partly jaded because of misfortune, but hasn't it been the very hand of God that has allowed my life to go on like this up until now?  And isn't it up to His sovereign hand what the outcome of my life will be in the future?  I wish I could say that I honestly believe that He uses all of our life experiences for our own benefit.  But it's difficult to truly trust that the enormity of my pain and disappointment has been a blessing rather than a curse.

It would be selfish and ungrateful for me to ignore the great amount of blessings in my life, from living in a beautiful location in a beautiful home, to having a loving and supportive family; from being the dog-mom to a most handsome miniature schnauzer, to having a secure job that I enjoy enough on most days to keep me going back; from having a master's-level education, to having access to healthy food and a healthy lifestyle.  When I consider the struggles of people around the world, mine seem so small.  But, my emotions are as they are, and because so much of my pain has been internal, sometimes the evidence of external blessings is clouded.

And I've arrived at this point in my writing without any conclusions.  Except that I know I want to be more present in my life, in the here-and-now.  And I do still have hopes for the future.  And if I am going to make an effort to stop living an imagined life, that means all I can do is entrust the outcome of my life to God.  And my one true future hope is this: that He will fulfill His promise to do more in my life than I am capable of hoping for or imagining.  My hope is to truly internalize, despite whatever circumstances I encounter, His divine goodness and love for me.

Upon further contemplation, I realize that my greatest gift as of late is vision for the future.  Not that God has imparted me with specifics on where or what or who, but I feel deeply drawn (perhaps called) in a direction.  And I don't think I would be moving in this direction had it not been for the very experiences I've endured.  I have always said that my one desire in life is to help people.  Now it is my desire to see my experiences, particularly the painful ones, act as the platform for my destiny and purpose.  If I am a lump of clay in the process of being made into some useful piece of pottery, then my trials are the tools that are shaping the form I am to become.  I believe that my pain is deeply tied to God's designation for my life, and so I can see now how my disappointments will actually lead me to be a truer, more authentic version of myself--the divinely-ordained version.  Ultimately, I cling to the belief that my pain will be the most profound source of my abiding joy.

What My Schnauzer Really Means To Me

My friends and loved ones all know how important my dog is to me.  They will tease me about potential online dating profiles I could create, which would bear headers like "Must Love Schnauzers."  Recently, two of my co-workers and I got into a discussion about relationships, more specifically about my love life, and I tried to explain to them the importance of my dog in finding a life partner.  I told them, "I'm not really picking a husband for myself as much as I am a daddy for Tobin."  My co-workers laughed, one of them suggesting that I was crazy (which she declared in only partial seriousness--I hope).

I got coffee with my best friend yesterday (I seriously struck gold in the friends department; I don't maintain a large inner circle, but the people dearest to me are the best people I could possibly hope for), and I recounted to her my experience at work.  We then sat together and discussed what Tobin has gone through with me.  Tobin entered my life in July of 2010, only five months after I had been diagnosed with Hashimoto's.  At that time, I had only been to one doctor for my condition (the naturopath who discovered I had the disease), and I had absolutely no idea what having an autoimmune disorder meant or how it would impact my life.  Tobin and I moved to North Carolina when I started graduate school in August, but after only a few weeks I had to drop out because my health was collapsing quickly and I felt like I was having an emotional and physical breakdown.  The following month, I was diagnosed with PCOS.

For the bulk of 2011, I couldn't work because I was in such immense physical pain and so extremely exhausted.  I went to physical therapy multiple times a week, in search of help with severe knee and hip aches that left me barely able to walk (which my current doctor was eventually able to determine to be the result of an almond allergy).  I was attending two art classes at the local community college, but couldn't muster up enough energy to do anything more than that.  At the end of summer, I broke my knee while running with Tobin on the morning of a day I was supposed to go to Disneyland.  I was out of commission for months, and was only able to start part-time work the following January.  During all this time, my hormones were riding a treacherous roller coaster; I felt irritable and anxious, and didn't menstruate at all.  I would go through stretches when I felt angry at everyone, only because of the imbalance that was making me feel angry--something outside of my control.

I started a master's program in the fall of 2012, and Tobin and I moved to San Diego after much waffling about whether I wanted to do the program and/or move out of my family's house.  I started school with much ambivalence, and in the first week of classes I switched my entire degree program.  I only lasted in San Diego for a little over a semester.  My period had returned the month school began, and had been coming consistently every month after that (mind you, this was after nearly three years of not getting it at all).  However, with it came even more extreme mood swings and hormonal issues.  I became increasingly depressed, to the point that there were some nights I felt nearly suicidal.  I would call my mom or sister in tears, feeling like I had no power over my own life.

My landlords were gracious and kind enough to release me from my lease early, in March of 2013.  Tobin and I moved back in with my family, which alleviated much of the stress of living alone with Tobin while managing school and chronic illnesses.  I had to commute over an hour both ways several times a week, but the stress of commuting was a welcome alternative to the emotional upheaval I had experienced while living on my own.  I was able to work with the local school district that summer, and finished my master's that fall.  I began working full-time in January of 2014, but had to leave my job after only a little over two months.  While in tears on the way to work, I would call my mom and tell her I felt like I was dying.  Little did I know that only a few months later, I would be diagnosed with thyroid cancer.  My body knew what was happening.  I quit my job and found work closer to home, and without the emotional stress of working with children with the most exceptional of needs.

All that is to say, Tobin has been with me through it all.  My Hashimoto's diagnosis in 2010 was the smallest of moments amidst the ensuing four years.  There were many days when I probably wouldn't have gotten out of bed, but because of Tobin, I got up, I fed him, I cared for him, and I didn't give it a second thought.  It was my duty to make sure he was okay, and I was able to take the focus off of myself and my disease and my suffering and invest my attention into something apart from me.  Meanwhile, he was totally oblivious to much of my suffering (at least as far as I can tell), and was the happy-go-lucky, energetic, loving, playful dog that he is, regardless of my mood or behavior.  That is exactly what I needed: consistency.

In many ways, Tobin became a sort of anchor to me as I drifted to and fro in the tides of sickness and wellness.  Whether I was rejoicing or suffering, he was the same every day, and his needs were the same every day.  He was the one joy I had in the midst of much joylessness.  And, even though my friends and family knew about my (mis)adventures around the country and state, Tobin was the only one who was physically with me through all the changes and struggles.  He was the one with me as I drove cross-country.  As I flew back home from North Carolina.  The moment I broke my leg.  The nights I called home crying because I was tired of being alive.  He was always there.

And so, for me to tell people that I want a daddy for Tobin isn't meant to be a joke.  It may sound funny to people when I say it, but only because they don't understand the gravity behind those words.  It's the easiest way for me to say that Tobin, in some senses, represents all of my illness and struggles for the past five years.  He represents the anchor that kept me grounded as my little boat attempted to drift out to sea.  To understand what Tobin is to me is actually to understand and validate my experiences and hardships from the past few years.  It is to accept me in my entirety, and to know the depth of what I've gone through and the ways in which my trials have shaped who I am and where I've been and who I'll become and where I'm going.  For me, Tobin is not just a dog, but he is God's greatest blessing and gift to me.  A sort of embodiment of God's love: consistent, constant, present, unwavering.

Tobin \t(o)-bin\ - Hebrew origin; a variant of Tobias (Hebrew); means "God is good."

My sweet dog lives up to his namesake; he is the embodiment of God's goodness in my life.

I Am Valuable, My Life is Worth Living

I don't love myself.

It's a realization I've made during the past weeks, or perhaps months or even years.  I don't love myself or find value in myself, and so I haven't been taking care of myself.

I'm not usually the biggest fan of Joyce Meyer, but over the weekend I came upon some words she wrote that spoke to my soul.  We can't love ourselves until we are healed emotionally, and we can't heal emotionally until we accept God's profound and unconditional love.

The depression demon usually visits me a handful of times throughout the month, generally in relation to a combination between where I am in my hormonal cycle and how I've been eating.  Tonight I was trying on some outfits, and all I could think about is how fat I am.  I looked in the mirror at how big (objectively speaking) I've gotten in so many places, and it made me feel totally unattractive and undesirable.  Coupled with those feelings is my already low self-esteem resulting from knowledge of my diseases, and the belief that I'm abnormal and tainted and not someone who anyone would want to marry; I cry in desperation, feeling like an alien creature stuck in a life she doesn't want, but incapable of having anything more or different.

In reality, I'm only 20 pounds heavier than my "normal," a result of hormone imbalances, cancer, and a puttered-out thyroid.  However, I think much of my self-worth hinged on my thinness, and now that it's gone (objectively speaking), I don't feel good about myself.  Before that, I found value in academic performance and achievement.  Before that, the perceived strength and quality of my faith in God.  I'm not in school and I've moved away from my legalistic Christianity and into something that feels less certain and secure (the loss of legalism is a good thing, the loss of security is not such a good thing).  Without my previous appearance, or academic accolades, or the recognition of a mature faith journey, I no longer have anywhere to find value.  Except the value that God has inherently created me with.

So much of my life has been about performing and doing and achieving that I missed out on many years of just be-ing.  When I was a missionary in China, for the first time in my life I was surrounded by a team of people who spent time doing things they enjoyed, simply for pleasure.  That concept was so foreign to me.  I didn't even know what I really liked doing.  I remember starting to spend afternoons outside with my camera, and then I bought some paint supplies at a bookstore and painted some pictures for the first time ever, just because I could.  I bought fiction books.  I downloaded music and learned about different singers and bands.  I began to exercise and cook healthy foods.  I became less focused on the appearance of my life to other people, and made choices that brought joy to my heart.

I'm not sure what's happened in the past four years, except I think that somehow with my medical diagnoses I began to give up on my life a little bit.  I remember when I was first told I had Hashimoto's Thyroiditis and probably PCOS, my immediate thought was, "Well, I guess I'm not getting married."  Somehow a disease made me abnormal, and that abnormality made me unlovable, and to be unlovable meant I had no value.  I think that I've been caught in the web of this pattern of thinking since that day in the beginning of 2010.  I am abnormal, so I have no value.

It's difficult to come to terms with the physical ailments you've been born with--to know that God created you with these proverbial thorns in your flesh.  I know that we all have our weaknesses and idiosyncrasies and problems, but somehow because I now see that I am not and can never be perfect, I have lost all sense of self-worth.  Perfectionism is such a painful and exhausting addiction.

But then I think about how much God has created me to be able to offer to the world.  My emotional and spiritual and physical struggles are but fodder for the possibility of ministering to others--of feeding God's sheep.  My suffering makes me more real and authentic and genuine (I hope), so that I can be a source of comfort and respite and truth to the people around me.  And He has given me gifts, as a human be-ing, that are unique only to me.  And not only gifts, but a calling to which no other person has been called.

I think about so many people He has placed in my life, people who love and value and appreciate me for who I am and nothing I've done.  People who have loved me through the ups and downs of my autoimmune disease, the good days when I've been kind and grateful and warm, and the bad days when I've been depressed and cranky and cold.  People who have loved me through my cancer, showering on me their support by way of an outpouring of financials gifts and notes of encouragement.  People who have continued to seek out relationships with me, even when that seeking out is very much one-sided.  All of that love and support and seeking speaks volumes about the love of God, and if the people in my life have valued me in this way, how much more does my Abba Father lavish His value and love and pride on this little creature He has created--me?

Earlier this year, I began to see a counselor to help me with PTSD from a near-fatal car accident I was in two years ago.  During our first session, she gave me a list of positive self-affirmations and negative self-talk.  We discussed some of the phrases from the list that I want to come to believe to be true.  I no longer see the counselor, but I have since begun writing these positive phrases in my journal.  I think there is a lot of power in claiming these affirmations in my own writing in my own personal journal.  I also began to rewrite some of the affirmations as truths about God (i.e., God is in control; God can be trusted).

I haven't been very consistent about going to the gym since my cancer surgery, but tonight, amidst a mini emotional meltdown, I knew I just needed to get out of the house and focus my mind on something other than my own unhappiness.  As my endorphins kicked in and I actually began to feel the cloud of depression lifting, I began to say to myself, over and over:

My life is worth living.

And then I added to that:

I am valuable.

And so I pumped those elliptical pedals and chanted to myself, "I am valuable.  My life is worth living.  I am valuable.  My life is worth living."

I have begun to make a list of things I want to commit to doing every day and/or every week in order to nourish my body and soul.  If I feel trapped in my life and want things to go differently, I am the one that needs to take steps to change what is changeable.  I am going to start taking care of myself because I am valuable, and my life is worth living.

He made me valuable.  He gave me a life worth living.

God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And the wisdom to know the difference.

Cancer's Lessons on Love

I think for many of us, the word cancer conjures up images of hairless scalps and hospital rooms and colored ribbons and walks for cures.  We think of kids with leukemia and women with breast cancer and smokers with lung cancer.  In terms of media and popular representations of cancer, there is a group of people that seem to totally be skipped over--those from 15 to 39.  Until I was diagnosed, I didn't realize that as a 28-year-old, I thought of cancer as some far-off thing that might happen to me much later in life.  I think I somehow subconsciously thought that if cancer didn't affect me as a child, I would be safe from it until I was elderly, or at least more advanced in age.

Even though I've only known about my cancer for three days, my perspectives regarding and perceptions of the C-word are changing.  I'm learning that it's not all chemotherapy and hospital stays and planning for the end.

What I've discovered after three days of knowing about my cancer (and I write this to sound like a generalized experience, but know that it is actually specific only to me):

1. A diagnosis makes you an insomniac.  You find yourself up at 3AM trolling the Blue Shield and American Association of Endocrine Surgeon websites, trying to find a skilled doctor that is part of your insurance network.  Or, you start Googling the scientific words they used in your biopsy report to figure out what the hell they're actually saying about your cancer cells.
2. You will find yourself in the bathroom a lot.  It will feel like you're getting an ulcer.  Food won't agree with your stomach.  You'll wake up and run immediately to the restroom.  You'll realize that at a time when you should be taking the best care of yourself ever, you end up making poor food choices because the bad foods comfort even if you can't digest them.
3. You will become an experienced ugly-crier, complete with snot over-production, mascara-stained cheeks, and whaling sounds.  The hardest moments will be when you find yourself alone and in a quiet place.  Those are the moments when you don't feel like you have to hold it together or be strong for anyone, and all you'll be able to hear amidst the silence is your conscious reminding you, "I have cancer."

But, in all seriousness, I think the reality of my condition hit about 30 hours after I learned about my diagnosis.  I was driving home from work, and I just started crying uncontrollably.  All day I was assisting customers with their needs, focusing on solving problems and finding what they were looking for, while being totally distracted from my own woes.  But it's once I got in my car and didn't have to smile anymore or be helpful or take care and be supportive of anyone else that I felt the weight of the world on my shoulders.  It's hard to muster up strength to meet people's needs when really you just want to collapse for a while and let someone carry you.  In some ways, going to work has been beneficial because it does serve as a distraction, but I think it's going to take time for me to learn that it's okay to go home and be weak.  He is sufficient to be my strength once I'm not distracted, and He's given me my family to share in His duty of carrying me through this without my having to feel guilty.

And I think that's the hardest part.  Realizing that despite the fact that you're stronger than you ever realized, you're simultaneously weaker than you every dreamed possible.  I guess that's the beauty of His power being made perfect in weakness.  He provides you with strength and hope and courage and tenacity, while also bringing you to terms with your need to seek help and accept compassion and rely on others without being able to offer anything but gratitude in return.  You will likely see an outpouring of love, and all you can do is accept it and realize you deserve it because you're invaluable and that people don't expect you to feel indebted to them in any way.  I guess I'm discovering that cancer teaches you about love.

The Day I Was Diagnosed with Cancer

For posterity's sake, since I'm sure one day I'll want to remember all the details...

It's been nearly 12 hours since my doctor gave me the news, and I think it's just now starting to sink in.  I have thyroid cancer.  I thought I was prepared for this diagnosis and that I expected this diagnosis--but somehow it still left me in a haze for most of the day.

At the beginning of May, I had my annual thyroid ultrasound and learned that my once-tiny nodule had doubled in size over the course of a year.  Because of this, the radiologist who analyzed images from my exam recommended a biopsy to determine the tumor's cytology.  I then had an ultrasound-guided fine needle aspiration biopsy performed on my thyroid last Friday.  Once the doctors tell you that they're seeing something suspicious, you start to brace yourself for the worst.  I had been mentally telling myself that I might have cancer--but still the whole idea of cancer didn't really sink in because I didn't know if I actually had it.  The assignment of that word seems to instantly make things sound a lot more serious.

I anxiously awaited news of the biopsy results from my doctor.  When I got off of work last night, I saw that I had a missed call and voicemail from my endocrinologist.  She didn't leave any specific information in the message, but I knew from her choice of words that it was likely not good.  She didn't indicate that there was no cause for worry, and made it seem very important that I speak with her as soon as I could.  I started to get a little emotional while driving home, and then once I was home and told my mom about the message, I broke down.  Here I had been talking for weeks about the possibility of having cancer, and then the reality hit that I might actually have it after all.  I just kept saying to my mom, "I have a feeling it's going to be bad."

I barely slept last night.  The hours I did sleep were restless, and then I work up nearly 3 hours earlier than I needed to.  I was making myself sick with worry, to the point that I went to the bathroom about 12 times in the span of just a couple hours.  I had to make a smoothie for breakfast because liquids were just about all I could stomach, and I knew I needed some nutrients.  Since my doctor didn't try calling me again last night or first thing in the morning like she had suggested she might, before work I ended up driving over to the imaging center where I had the biopsy done so that I could get a copy of the report.  Unfortunately, the pathology hadn't been faxed to them yet, so I left empty-handed.  Then I tried calling my primary care physician's office to see if they might have a copy of the report, but once again I was unsuccessful.  So, despite my best efforts at quelling the major anxiety I was experiencing, I was forced to continue to wait.

I got to work and couldn't really think about anything except for the fact that my doctor needed to talk to me and that she had the results and I didn't.  It's terrible knowing that the truth is out there, but is being kept from you.  I checked my phone a few times while at work, and saw that I had a missed call from my doctor's medical assistant, asking that I leave a message at their office with some good times that the doctor could call me.  I was so anxious to talk to my endocrinologist by this point that I left my work phone number and told her to call me there.  This situation seemed to grant an exception to a standard no-work-phones-for-personal-use policy.

Less than an hour after I called my doctor's office, the phone rang, my co-worker picked it up and then let me know the call was for me.  I excused myself to my boss's office and took the call there.  I don't remember everything my doctor said in those first few moments we spoke, but I don't think I'll ever forget these words: "They did find some cancer cells."  I was actually relatively calm and collect when she shared the news with me.  She told me about the type of cancer (papillary) and the prognosis (good).  She told me she would send me the names of some excellent surgeons and promised to be with me every step of the way.  She even offered to speak with my mom and explain it all to her.

After the phone call, I walked into the bathroom for a few seconds where I cried, but then quickly composed myself and got back out to the floor.  We've all heard the expression "I felt like I was dreaming," but I think today marks the first time I truly experienced what those words mean.  I was conscious and in my body, but it just sort of felt like everything was going on around me and I was totally detached from it.  Cancer.  Cancer.  Cancer.  At first, saying, "I have cancer," made me cry.  Now it's starting to sound more normal.  My new normal.

I realized that I should tell my manager what was going on, so I pulled her aside into the office and said aloud for the first time, "I have cancer."  She was truly wonderful and compassionate and actually managed to make me crack up amidst all of it, which I think is a gift of hers.  She excused me to make some phone calls and told me to not worry about getting hours covered.  I then called my mom, and for the second time I spoke the words, "I have cancer," and again the tears came.

Today was certainly not my most focused, but somehow I managed to get through a full workday.  While at lunch, I subtly broke the news to Facebook friends. My mom brought me flowers at work.  I contemplated the fact that not a single customer knew that the sales associate helping them was just diagnosed with cancer.

I got off work and returned home in that same foggy mental state.  I talked to my parents for awhile, and I cried fewer tears and had an easier time talking about my cancer.  I have cancer.

And life still goes on.  I ate my regular dinner and did my regular gym routine and the whole world kept on being normal.  Except I can't help but feel like everything's changed now--like my whole life is going to now be marked on a timeline of "before cancer" versus "after cancer."  I think about the fact that soon I will be a member of the group "cancer survivors."  I also think about the post I wrote several weeks ago and said that at least my thyroid disease isn't cancer--but now it is cancer.  One phone call changed me forever.

Before I heard the official news, somewhere amidst trips to the bathroom and the imaging center, I kept thinking about Psalm 139:5.  He goes with me and before me.  His hand is upon me.  Knowing that He's prepared the way and is not surprised by this and that nothing's changed for Him comforts me, because right now amidst all the changes I can be sure that He will be steadfast and unchanging.  I have peace and hope because I know that He is my Great Physician and oversees my life and health.

Once the diagnosis came and news had time to settle, the verse that came to mind was Psalm 23:4.  Even when I walk through darkness, He's with me.  There is nothing to fear.

I know it might take a few days to truly process the news, but overall I have actually been impressed by my own resiliency (and I say that with sincere humility).  Somehow the word "cancer" makes me feel like I should be freaking out, but, despite my shock, I'm actually not all that surprised.  I think somewhere deep down I knew this was coming.  He goes before me and guides me.  He leads me to green pastures and still waters.  He restores my soul and fills my cup to overflowing.

What If I'm the Five Percent?

It's funny how passively we can talk about cancer when it poses no obvious threat to us or the people we love.  We use it as a sort of slang word--a word used in casual conversation to epitomize profound suffering.

For the past five years, I've had to get ultrasounds of my thyroid.  Initially, the doctor that diagnosed me with Hashimoto's just wanted a visual baseline of what was going on with my gland (nodules are common in those with autoimmune thyroid conditions).  With every test, there have been small changes, but generally no cause for concern.  My thyroid was inflamed, but it slowly got smaller, and my nodules weren't changing in size (actually, I think one disappeared).

When I went in to pick up my report from this year's ultrasound, I was surprised to see that the radiologist recommended a biopsy.  Not only this, but the nodule had doubled in size since my last exam.  You can imagine my alarm in learning this, when last year the basis for my and the doctors' believing the nodule was benign was the fact that it wasn't growing.

In terms of statistics, only five percent of thyroid nodules are malignant.  However, that rate dramatically increases when various factors are considered, like the patient's age, whether the nodule is solitary, and the nodule's features.  Unfortunately, despite the fact that most nodules are benign, mine meets many of the criteria that make it potentially cancerous, and none of the criteria that indicate it's probably benign.

It's a strange feeling not knowing whether you're part of the five percent.  Of course, immediately there is a lot of fear and sadness.  You troll the internet in hopes of being able to self-diagnose the nodule as malignant or benign (this is impossible without a biopsy).  You ruminate about the fact that you may or may not have cancer.  You spend a lot of time going back and forth in your mind, playing out the scenarios either way.  You realize that you will be okay either way.  Somehow, I think an actual diagnosis is probably a lot less scary than the not knowing.  When you have a diagnosis, you know which mountain you face.  When you don't know, you don't know.

Aside from being emotional (but that's nothing new), the news doesn't exactly surprise me.  I've been so inundated in healthcare and medical treatments during the past few years that I've almost come to anticipate issues like this one.  Yes, I am worried, but less about what will be done if I do have cancer than I am about having doctors and treatment protocols I trust.  A potential cancer diagnosis is terrifying to someone who is skeptical regarding modern medicine and suspicious about most doctors.

Today, I saw a new doctor that told me God made my cells and designed them to know what to do.  She said that I need to start thanking Him for my body and realize that He gave me a healthy body; it's the environment and our food and toxins that have tainted my healthy body.  Her words made me cry, because I so often think of myself as being sickly and diseased that I forget that I didn't start out this way.  It's comforting to know that God didn't give me a lemon from the get-go.  I was given a healthy body that bears the effects of an unhealthy world.

I need to start thinking of myself as healthy with or without a thyroid or some lymph nodes--whether or not I'm part of the five percent.  "For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh" (2 Cor. 4:11, NRSV).  I am healthy because His spirit is within me.

Birthday Avoidance

I didn't remember that it was my birthday until a PCOS support group that I'm a member of e-mailed me at midnight.  Oh, that's right.  It's my birthday.

It seems totally strange to have forgotten one's own birthday.  In fact, when my co-workers, or family members, or even the ATM machine wished me a happy birthday during the past few days, I was almost startled by the words.  Oh, that's right.

I think I stopped celebrating birthdays after my 23rd.  It was during the year that I would turn 24 that I was diagnosed with Hashimoto's and PCOS.  I still remember the day my doctor gave me the news.  I decided to go shoe-shopping at Nordstrom Rack after my appointment, and I meandered through the aisles in a haze.  All I could think about was how my life would change and all that I would give up now that I was "diseased."

Last night, I had a vivid dream in which a doctor was showing me lab results that indicated high LH and low FSH levels in my blood (two reproductive hormones).  When I woke up this morning, I immediately went to Google and asked what those results would indicate.  It's PCOS.  I'm not sure if my subconscious was already aware of that information and was simply processing it in my sleep, or if my body is smart enough to know that its hormones are out of balance, and it's telling me exactly what's wrong while I'm dreaming.  Interestingly, in past labs my LH and FSH scores have always been normal.

So, when I woke up this morning I was only semi-aware of my own birthday, dwelling on my whacked-out hormones, thinking about the thyroid ultrasound I was about to have, and then I came downstairs and saw a birthday present from my parents atop the kitchen table.  I burst into tears.  Presents, with their wrapping paper and bows and cards with well-wishes, symbolize happiness and celebration, and I realized that there was little I was feeling happy or celebratory about.  Sometimes it just feels like this life is happening to me, and I've given up even trying to be happy or celebrate in the midst of it.  My mom tells me I'm depressed.  I know I am.

I kept forgetting my birthday because I didn't want it to happen.  I don't want to acknowledge turning another year older.  I don't want a reminder of my illnesses, and age, and current set of circumstances.  When I begin to ruminate about all those things, it just makes me hate my life, and instead of feeling grateful for gifts, I cry over them.

Today I've been receiving "happy birthday" messages on Facebook and my cell phone.  I started to contemplate the fact that people are telling me to have a happy birthday, but that they should more aptly say "depressing birthday" or "annoying birthday."  That's how I feel about my birthday this year.  Go away, birthday.

After I wiped away my tears and composed myself, I headed over to the local imaging center to have my annual thyroid ultrasound.  While I sat in the waiting room, I thought about how no one there knew it was my birthday and I wondered if they thought I looked sad (realistically, none of them were probably paying much attention to me).  I also thought about the fact that I am at least 20 (and probably closer to 50) years younger than the people I usually see in those waiting rooms.  It actually made me feel momentarily young.  But still diseased.

And then I was called in for the exam.  I think this was the fifth time I've had my thyroid and its nodules inspected.  Unlike the other inspections, today the ultrasound hurt.  I know that my thyroid's been inflamed, both because my doctor told me it is and because it's been hard for me to swallow and I just feel that it's enlarged.  Having the roller on the exam wand roll around my throat, pushing into the inflammation, I remembered why I woke up feeling so blue today and why I haven't been doing well lately.  Hashimoto is on the loose in my body.

When the exam was finished, I walked out to the parking lot, opened my car door, sat down on the driver's side seat, and pulled down the mirror on the visor.  I tilted my head back so that my neck arched, and I scrutinized the area where my thyroid lies hidden.  Yes, definitely swollen.  In fact, the one side that hurt the most during the exam was actually visibly larger than the other side.  Oh, that's right.  Hashimoto's.

Somehow seeing my enlarged thyroid actually began to put things into perspective.  I am sick.  I'm allowed to be sick.  I'm not crazy.  I'm not doing something to myself.  I have a disease, and right now this is what my body is choosing to do.

I realized that instead of struggling against being sick right now, I think I need to just rest in the experience until a doctor helps me get things right.  Yes, my gland is inflamed.  Yes, I need to lose weight.  Yes, I'm exhausted.  Yes, I ache.  Yes, I have an autoimmune disease.  Oh, that's right.

I didn't choose this for myself, but this is my life.  And as much as I can ignore the fact that I have a birthday this year, I am turning another year older.  I am seeing a new doctor in a few weeks.  I'm going to talk to her about possibly switching to a different natural thyroid hormone.  I know this isn't how a successfully-treated person should be feeling.  And that is the one small hope I cling to--the belief that this is just a momentary lull in my treatment, and that things are bound to get better.  That next year they'll be better.

And so I celebrate, not for what is, but for what I am confident will be.  I celebrate the hope that next year I will remember my birthday.

But You're So Young

If I had a quarter for every time someone exclaimed those words to me, I'd be a rich woman: "But you're so young!"

People are frequently astonished by the number of doctors appointments I've had, tens of thousands of dollars I've spent, and variety of specialists I've seen during the past five years.

Endocrinologists, gastroenterologists, naturopaths, orthopedic surgeons, neurologists, otolaryngologists, gynecologists.

Today I had a marathon of doctors appointments, from 8AM until 5PM.  I was told two important things: I'm special and I'm so young.  I suppose the two go hand-in-hand.  My body is so young that my chronic illnesses make it "special," and I am special so I was bequeathed the duty of bearing these chronic illnesses.

Hashimoto's thyroiditis.  Faulty thyroid.

PCOS.  Faulty ovaries.

Insulin resistance.  Faulty cells.

Meralgia paraesthetica.  Faulty nerves.

Chondromalacia patella.  Faulty bones.

Small intestinal bacterial overgrowth (yet to be diagnosed). Faulty digestive tract (I'll spare the details).

Chronic otitis media. Faulty ear canals (and faulty earwax).

And, for those reasons, today the neurologist's physician assistant proclaimed, "But you're so young!"

I returned home from my appointments feeling a little blue.  It's difficult not to be overwhelmed and sinking in a mire of self-pity when you're thrown orthotics and leg braces and physical therapy prescriptions and nerve tests and ear-canal suctioning and advisement to lose weight; when you're told your "special" ears (the doctor's words, not mine) require regular cleaning treatments and that you'll likely require knee replacement surgery in the future and that there's a 30% chance you'll never regain feeling in your thigh due to nerve damage.  After all that, you begin to share in the PA's sentiments--but I'm so young!

Every part of my body is affected, from top to bottom.  There is some faulty part of me in every section of my anatomy.  When you think of all those faulty bits, the distinction between faulty components and faulty whole becomes blurred.  I feel faulty.  I am faulty.

The one ray of hope that shone through the dark cloud of my brooding was a recollection of Paul the Apostle's words: "So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,  as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal" (2 Cor. 4:16-18).

Reflecting upon those words now, they bring tears to my eyes.  Yes; my outer self is wasting away.  Yes; I face affliction.  But, as my body undergoes treatments and receives diagnoses and becomes more and more faulty, my spirit is being made more whole.  I am being conformed more and more to His likeness.  My suffering is actually light and momentary.

"The eternal weight of glory beyond all comparison."  Those are words I want to cling to on days like today.  The eternal weight of glory.  The burden of my illnesses feels much lighter knowing how much weightier the coming glory will be.

My body is transient and temporal.  His purposes are eternal.

The Slow Life of Recovery

A fellow autoimmune-disease-sufferer recently described the healing process as "slowing down life to a crawl and setting boundaries."  For a lifelong perfectionist and overachiever, the "slowing down life" part of autoimmunity can be wearing on the self-esteem.  Mind you, I have no trouble at all with the actual slowing down of life; I can lounge and binge-watch Netflix like any good couch potato.  It's the thinking related to the slowed-down life that sometimes gets me down.

I am fairly content right now with my circumstances, not because I feel like I am fulfilling my dreams and passions, but because I feel like I can breathe and wake up in the morning without wanting to die.  I know that sounds melodramatic.  But, I know that my autoimmunity has gotten the better of me when I struggle to get out of bed, when tears constantly seem to be seeping out of my eyes, when I stop being able to make decisions and feel like my sanity has left me.  My body becomes inflamed, my thyroid swells and affects my swallowing, my joints hurt, I crave sugar and fatty foods.  I can't sleep at night.

I recently made the difficult decision to leave a full-time job after only two months of employment.  I had been pursuing special education for the past few years, and I applied to jobs like the one I took in an effort to maintain a cohesive resume.  However, it only took about a month for me to realize that the job was killing me--really--and that I needed to seek other employment if I didn't want to end up hospitalized.

A retail position in my hometown providentially opened up right at the time I finally had the courage to give notice at my old job.  I was offered a new job that has nothing at all to do with my bachelor's or master's degrees and really doesn't formally require any specified education, but it doesn't add stress to my life.  In terms of the amount of mental exertion it requires and stress it causes as compared to my previous role, the position would be classified as slow--a slow job for a slow life.

It's actually been fascinating to see how my body has responded to stressful situations in the past few years.  Normally I shut down completely and have the urge to flee.  I am thankful that my body takes care of itself even when my conscious mind tries to push me beyond reasonable (for me) limits.  I dropped out of graduate programs, moved across the country and back, changed majors, changed jobs.  It may seem reckless and confused to an onlooker, but really the back-and-forth nature of some of my decisions and life activities has been nothing more than a battle between my body protecting itself from breaking down and my mind telling me that I need to live up to my own unrealistic expectations.

It is humbling working in a retail position with a master's degree in hand.  I am not making very much money (not even enough to meet my basic monthly expenses).  I live with my parents.  Sometimes I feel as though my intellect is atrophying.  But I'm breathing.  And I'm alive.  And I'm not just surviving.  I am still inflamed and my thyroid is still swollen and my joints still hurt and I'm still 30 pounds heavier than I normally am.  But I have hope.  It's going to be okay.  I'm going to be okay.

The same person that described healing as a slowing down of life also said that it is how we recover from autoimmune burnout that is most critical.  I can think about how I'm not using my graduate degree; or, I can think about how amazing it is that I was able to earn a master's degree despite the mass of obstacles I've endured in the past couple of years.  I can think about how I don't have a career and haven't met my earning potential; or, I can think about the ways in which my current job suits me and allows me the freedom and flexibility to sleep in and see doctors during the week because of my nontraditional schedule.

My fellow autoimmune-disease-suffer said that as our lives slow, we not only heal from years of exhausting our adrenals, but we discover our purpose.  And, according to him, it is after that simultaneous healing and finding purpose that we can thrive.  When my life is slower, my mind gets quieter.  And when my mind is quieter, I stop pushing myself.  And I listen to my heart.  And I let my body lead.  When my life is slow, the first threat of stress immediately gets pushed away.  That's how I know I'm not ready.  And somehow it's easier to listen to my heart when I know I'm in a season of waiting.  The perfectionist, over-achieving tendencies get shelved because I know there is nowhere to push myself.  I'm waiting.  I'm not ready.

And I think that when I am ready, it won't be my conscious mind pushing me anymore, but my heart guiding me into the happiest, healthiest places where my body knows it will thrive.

The Unhappy Mind of an Unhappy Thyroid

I sat in the family room with my parents while my mom read and my dad channel-surfed.  I had my dad check what was playing on a few of the T.V. stations that I usually enjoy, and saw that The Little Couple was on.  Some years ago I was a dedicated viewer of the show, so I felt sad to hear the recent news of Jen Arnold's cancer.  The show features the day-to-day experiences of two little people that are married, and Jen is the wife in the "little couple" duo.

After watching the show for a few minutes, I was awed by Jen's attitude.  She was born with dwarfism, underwent multiple surgeries and hospitalizations as a child, struggled with infertility, battled cancer.  She lives in a world where her stature makes her 'abnormal,' which adds to her slew of trials.  I began to think about how inspiring it is for people who face adversity to maintain positive attitudes in light of all the negativity they could focus on.  I can think of a woman I knew who has now passed from cancer, but while she was still alive and undergoing chemo, she exuded peace and joy unlike even the healthiest people I knew.

But then I started to think about maintaining a positive attitude when you have Hashimoto's disease.  You can tell yourself to buck up, or just think positively, or focus on all the good in life.  Hey, it's not cancer, right?  The fact is that autoimmune thyroid disease often robs you of the ability to be positive in the first place.  The depression, apathy, negative moods, feelings of worthlessness can be profound--and they are all due to the malfunction of a butterfly-shaped gland in the throat.

Perhaps that's what makes invisible autoimmunity particularly ravaging on the body.  Not only does Hashimoto's cause physical pain, exhaustion, brain fog, weight gain, but it also takes control of the very ways in which we think.  Even if we wanted to think positively in spite of our circumstances, we can't.  And the loss of control over our very perceptions of the world and ourselves makes us feel very helpless indeed.

I don't mean to minimize potentially fatal conditions by any means, but only to point out that autoimmune disease is a beast of its own.  Sometimes I'm hard on myself for not being more upbeat or energetic or productive or grateful.  I forget that my hormones are giving my body all the wrong signals, and my metabolism is sluggish, and I'm experienced chronic inflammation.  It's so good to be thankful no matter what a person's lot--but it's also okay to be sick and to validate very real experiences of suffering, without feeling guilt associated with not focusing on blessings apart from illness.

I think, for me, a loss of some sense of control over my body has been one of the hardest parts of battling autoimmunity.  Currently, I feel as though I've given up even trying to control the things that I can--and I find this makes my condition worse.  The elimination diet, and carb-counting, and exercise regimen actually give me greater health.  But perhaps some part of me is in denial that those things are a necessary part of my reality, and so I willfully choose to ignore them as a means of reasserting control over my life--which actually ends up leading to less control as I become sicker and my overall mood declines.

It's a tiring cycle, and sometimes I wonder if I'll be forever mourning the loss of what would have been a 'normal' life.  You would think that by now I would have come to terms with my reality, but I still think longingly about what could have been (or, perhaps even what I thought should have been).  The one chance I have of finding positivity amidst the struggles (a.k.a. controlling my mind) is to take control of my body and health in the few ways I can.  Even if I can't choose to be happy right now, I can choose to take better care of myself, which I hope in turn will bring with it the happiness.

Sharing Our Lives Beyond the Keyhole

Some time ago, I read an article that compared our observing other people's lives via social media to seeing someone's life through a keyhole; we have a very limited perspective of what actually goes on in that person's life, and by and large those observations are of positive events (marriages, births, new jobs, moves, etc.).

In thinking about what it means to be authentic, I recognize that true authenticity means sharing the not-so-good along with the good.  When we "keep it real," we tarnish the façade of a perfect life and remove the possibility of even creating that notion in the first place.  In cultural studies, we often talk about how the abnormal is only defined as such by its relationship to the invisible, unmentioned "normal"--the diseased in relation to the healthy.

When we make our struggles less private, we make them less powerful.  My logic in this is twofold.  Firstly, oftentimes our experience of suffering is tied to some sense of denial.  If we keep the struggles a secret, they seem less real to us.  It allows us to keep from acknowledging the true condition of our lives.  Secondly, we usually cling to a lengthy set of assumptions regarding how people will view our diseases (which, in itself is a word rife with negative meaning).  We give in to the idea that we are abnormal, and hence reinforce that "abnormality" by separating ourselves from "normal" people and hiding the suffering we endure.

For the past few years, I know that I've begun to increasingly hide out in my suffering.  My mind goes through a similar script: "They just won't understand," "I'm different than people my age," "I'm weird," "I don't want to deal with all the questions," "It's easier to just stay away."

Additionally, I think that for me hiding out is a way of ignoring my real circumstances.  I think back to how life was 5 years ago, 3 years ago.  Since I'm not happy with how things are going now, hiding allows me to distract myself from what's going on and save the need to give a lot of explanations to people, even those I once considered myself close to.

But, lately I've been thinking about how stupid it is to hide what's going on in my life--to attach all these negative meanings and beliefs to things that are, truly, so small in the grand scheme of things.

By keeping it real, I can share things like:

• I take 32 various pills/capsules throughout the day (mostly vitamins and supplements).
• There is a list of something like 30 specific foods/food groups I cannot eat.
• I've gained 30 pounds in the past year and 9 months because of thyroid and reproductive hormone imbalances.
• Many people my age are married with kids and a mortgage, but I had to move in with my parents because living on my own almost killed me.

There is something powerful about making these truths un-private, and acknowledging the reality of my circumstances.  By saying, "Yes, this is my life.  This is just the way it is," I think I somehow take a little more control of what's going on, and it removes all those voices telling me I'm weird, different, abnormal.  It empowers me to make changes where I can, and in cases where I can't, to recognize that my diseases place certain limitations on my life but none that make me need to isolate myself from other people.

About 6 months ago, at a particularly dark moment in my autoimmune experience, after reading that article on social media and keyholes, I wrote a haiku entitled "My Grass Isn't Greener."

What if my keyhole

Didn't entice the viewer

Filled with emptiness

The reality is that each of us struggles and suffers.  We all encounter trials and tribulations.  None of us is perfect, and I think most of us experience feelings of being abnormal and not belonging.

So what if instead of sharing with one another only our keyholes, we share with one another our lives beyond those very limited views?  What if we become truly authentic, and keep it real by owning up to what's really going on in our lives?

I wish we lived in a world where the focus wasn't so much on fitting in, but on being as genuine as we could possibly be.  I know that the plastic bodies, veneer smiles, and hot cars will never go away.  But it's nice to envision a place where people feel free to share their not-so-good parts, and those not-so-good parts are viewed no differently than the "good" parts.

I wish we could see one another holistically.  I wish we didn't have to live in fear of one another.

Finding Purpose in the Ashes of Suffering

This afternoon, I started to half-consciously ask myself, "When did I become so filtered?"

At what point in my life did I start worrying about what people thought of me?  When did my writing change because of how it would be received?  When did my art stop because I didn't think it was good enough compared to real artists?

When did my childhood dream of working in a shopping mall on Mondays and an artist on Tuesdays and Wednesdays become not okay?

I wish we weren't filtered.  I wish we were real, authentic, genuine people.  I wish we contributed our unique gifts to the world.

Earlier, I read a quote by Vartan Gregorian: "The universe is not going to see someone like you again in the entire history of creation."

We are so driven and simultaneously trapped be our senses of duty and responsibility, by the endless struggle for survival and striving for success.  We think that more money, power, love, (whatever) will bring us more happiness--will provide us with more room to find the real 'us.'

But perhaps the very identity--the truest and deepest identity--we hope to find is the one that is found without money, power, human love, (whatever).  When we can pursue our dreams in spite of potential losses, in the face of great odds, then I think we are living authentically.

In our world of options and possibilities, I think it's become increasingly difficult to find a niche.  There are so many directions we could take, and sometimes I believe our own thinking paralyzes us from taking action.  What's more, creative/alternative enterprises and careers are not celebrated or compensated, and so there is little motivation to pursue what is potentially a person's true heart's desire.

I think that highly sensitive people and INFJs are particularly susceptible to feeling lost.  HSPs are overwhelmed as it is by sensory input, and so to present them with endless choices is to overload their psyches.  And for the INFJ, there is this need to contribute to the greater good of mankind and make a mark on the world--and so often we fear that we will somehow make a wrong turn and miss our calling.

Barbara Sher, in I Could Do Anything, writes that truly knowing how to live means believing in what you're doing with all your heart--regardless of wealth and status.  According to a Harvard study, real happiness is dependent upon a person's knowing what s/he wants and believing that s/he is moving in the direction of that goal.  Sher claims that our skills are of little consequence, but it is what we love to do that should guide our careers and lives.

I believe that each of us has a particular calling and purpose.  I know that, for me, the autoimmune journey is somehow deeply tied to my own.  I think all of the trials we face make us more compassionate, empathetic, and authentic; they bring us closer to becoming the people God designed us to be.

Sher states that in times of war, there are fewer incidences of depression because everyone feels that the work they do has great meaning.  All efforts, large and small, are necessary for the survival of a community.  I think, then, that times of adversity maintain a particular ability to awaken our sense of purpose.

When we become ill, our options and choices are sometimes limited, which can focus how we spend our time.  But, perhaps more importantly, when we become sick, we no longer have the time or energy to devote to causes that don't truly arouse our heart's interests.  And our perspective goes through a sort of spring cleaning in which we catalog those dreams that are truly important, and everything else is released.

Autoimmunity forces us to reevaluate everything in our lives.  And it tests us, in every way, and often shows us we can endure more than we ever thought possible.

With a new-found awareness of that strength, how then can we live believing we don't have something meaningful to contribute to the world?  Creativity and beauty and authenticity?

Recently, a customer where I worked asked me about my philosophy on art and creativity.  He wanted to know what I think about humans' artistic interests.  I told him that I believe we were fashioned to imitate the Creator, to create beauty that reflects His glory and truth.  I think we were fashioned to be like Him.

And what a beautiful thing, to know that out of the ashes of suffering, rises the beauty of art.  He uses our experiences to allow us to create that which will bring glory to Him.  Our suffering is not needless, but in fact reveals truth.

Knowing that my illness ultimately does good, how then would I be able to complain or live immobilized by my own self-pity?  I rise up out of the ashes and create.