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.

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.

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.

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.

Signs of a Bad Thyroid Day

1. Feeling like you'd rather die than deal with how you're feeling.
2. Goiter - swollen gland, scratchy throat, hard to swallow.
3. Everything hurts.
4. Sleep, sleep, sleep, more sleep...
5. Legs heavy, swollen, retaining water.
6. Not wanting to get out of bed in the morning.
7. Not wanting to get out of bed in the afternoon.
8. Crying because of how crummy you feel.
9. Crying because you just feel like crying.
10. Wanting to just take a vacation from everything because you're so tired.
11. Feeling hopeless that things will get better.
12. Feeling frustrated that those close to you just don't get it.
13. Feeling annoyed by lack of doctors' help.
14. Not being able to think clearly or focus.
15. Wanting to lounge around and mindlessly watch T.V. or Netflix all day.

My Hashimoto's Diagnosis

Looking back at my Hashimoto's diagnosis, it all seems very anti-climactic.  My then-naturopath casually (perhaps flippantly) told me I had an autoimmune disease of the thyroid.  He explained to me in basic terms what this meant: my body doesn't recognize its own thyroid gland; it produces antibodies against the thyroid to destroy it.  He prescribed some herbal supplements and introduced some new dietary guidelines (cook some goitrogens, avoid others).  It all seemed and felt rather manageable, and I figured that once a diagnosis label was given, healing would be instantaneous and I could go about my life without giving much thought to 'Hashimoto'...

Fast-forward four years.  Having an autoimmune disease sucks.  Instead of progressively getting better, at times I almost wonder if I'm getting worse.  My mood was bad before, but I was in great shape and in no pain.  Now my mood is usually steady, but I'm just on the verge of crossing over into 'overweight' territory, and I have weekly, if not daily, joint pain.  I had bad (no) menstrual cycles before, but my circadian rhythm was in check and I woke without an alarm clock.  Now I menstruate each month like clockwork, but I can't fall asleep at night and struggle to get out of bed in the morning.  I floundered in the face of stressful situations (moving, jobs changes, taking care of a new pet), but continued to dream about the future.  Now I still flounder in stressful situations, but it's becoming more difficult to dream about the future.

I've invested so much time, energy, money, and research into getting well, but when you have an autoimmune disease, sometimes the quest (fight?) for elusive wellness might as well be the same as a hamster's quest to reach the end of its running wheel.  At what point does the hamster give up running, and do we follow suit when healing comes slower than we anticipated?

Four years ago, I had no understanding of autoimmune diseases.  When I was diagnosed with one, I had no grasp of how that reality would change and shape my life.  I've spent the last several years dedicating myself to understanding my condition, making changes that will improve my quality of life, and trying to find a means of surviving and thriving without feeling like my life is somehow lesser.  This is difficult to do.

I am relatively young, and to see the other young people around me doing the things young people are 'supposed' to do can be disheartening.  It's usually easier to focus on the losses that come with an autoimmune disease instead of the benefits (and now I realize I'm not sure there really are many benefits, save for forcing a person to be committed to a healthy lifestyle).

Coupled with my autoimmune struggles are the struggles I face as a Highly Sensitive Person (HSP).  Those struggles so seem to overlap, and I'm convinced that somehow the creatively intelligent and highly sensitive are more susceptible to autoimmune diseases and health ailments.  I'm not sure if there's any valid scientific data to back up that belief, but the idea certainly seems to pop up fairly frequently in online literature...

And so I live feeling somewhat stunted and stuck, afraid to dream and venture out because of how my body may respond.  Will my thyroid retliate?  Will my soul be able to deal with an overload of new sensory information?  Will I feel okay tomorrow?  If I don't feel okay, will I be able to take care of Tobin?  Damn you, Hashimoto.

I hover above a line that divides military-like vigilance and dedication to sleep schedules, meal plans, and exercise regimens from a denial-based desire to sleep whenever I want and eat whatever I want and move whenever I want.  I do yearn for physical healing, but I also want to be in control of my own life.  Ever since my diagnosis, it feels as though Hashimoto, not I, controls my life.

I can only hope and pray that this proverbial thorn in my flesh is for some greater usefulness and purpose, if not for myself then for others.  I continuously recall Cardinal Newman's meditation, and press on with the belief that He has committed to me a specific work that cannot be accomplished by any other person.  I must rest in faith that my diagnosis is part of that specific work and calling.

"God has created me to do Him some definite service; He has committed some work to me which He has not committed to another. I have my mission--I may never know it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for nothing. I shall do good, I shall do His work. Therefore I will trust Him. Whatever, wherever I am. I cannot be thrown away. If I am in sickness, my sickness may serve Him; in perplexity, my perplexity may serve Him; if I am in sorrow, my sorrow may serve Him. He does nothing in vain. He knows what He is about. He may take away my friends, He may throw me among strangers. He may make me feel desolate, make my spirits sink, hide my future from me--still He knows what He is about."

-Cardinal Newman