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.

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.

The Day My Thyroid Was Removed, Part II

To read Part I, click here.

I woke up gasping.  It felt impossibly difficult to swallow air into my lungs.  I was disoriented.  I started crying.  I tried to rub my eyes, but a pulse monitor on my finger and various tubes got in the way.  I started asking for water as I wept.  "Water.  Can I have some water?"

I heard a male voice tell me to stop rubbing my eyes.  It was my nurse.  He said he was going to have to call an ophthalmologist if I didn't leave my eyes alone.  I began asking for my parents.  "Where are my parents?"  My parents were called to my bed.  The nurse offered me ice.

My bed was in a rectangular room with many other beds.  All of the beds were situated around the perimeter of the space, and a work area for nurses was like an island in the center of the room.  My bed was at the back left.

When my parents came in, they called my brother at home.  He sent my mom a picture of Tobin on her iPad.  When she held up the picture, I started crying again.  Then my mom handed me the phone so I could talk to Tobin.  Through tears, I said, "Hi, honey!  It's me!"  I started babbling to my parents about how I wanted Tobin "right here," and motioned towards a spot on my bed.  I was in and out of sleep, as was my dad (possibly my mom, too, but I didn't notice).  I had a pack of ice on my neck.  My mom took a picture of me to post on Facebook.

After the initial offer to chew on ice, I was eventually given water, and then apple juice.  The nurse told me that this was to make sure the anesthesia wasn't causing any nausea.  At some point I was escorted to the restroom.  I had to urinate into a pan so the amount could be measured.  I walked back and forth from my bed in a gown that may or may not have been open on every side (cancer and major surgery certainly take away any sense of modesty or embarrassment).

Eventually I was transferred from one post-op room to another.  I think they transported me in a wheelchair.  I was then assigned a new nurse in this new room.  This room had more privacy; instead of curtains on three sides, there was only one curtain.  The anesthesia slowly wore off.  My new nurse ordered me the "broth plate" (broth, Jell-o, applesauce, orange juice--I think) from the hospital cafeteria.  I told her about my dietary restrictions, so she went out of her way to ensure that my plate was gluten-, dairy-, and soy-free.

My mom let me fiddle with her iPad.  I went to the bathroom again without assistance.  I read my library book.  My parents eventually went back to their hotel to rest and get some food.  I continued to read.  A male nurse came in and asked what my book was about (hoarding), and we had a brief conversation.  My surgeon came to visit me.  I was jubilant to see him (he's become some kind of major hero in my mind).  He told me that since I seemed to be recovering so well, I could eat solid food.

The nurse ordered my dinner plate, again noting to the chef my particular dietary restrictions.  I ended up getting roasted chicken, green beans, and fingerling potatoes (it was just about as delicious-tasting to me as a meal could possibly be).  My parents came back at some point either right before or during my meal.

I wore some kind of compression devices on my legs to prevent blood clots.  They began to make my legs sore, so the nurse turned them off.  Around 9PM, it was finally time for me to be transferred to the overnight room.  They wheeled me through what felt like multiple buildings, until we reached my home for the night.  I was given my own room with a sliding glass door and restroom.  I was given a controller with buttons for the bed, light, and nurse.

After the switch, my parents left for the evening.  I had a chance to wash up for the first time since before my surgery that morning.  I discovered that I had yellow streaks running across my neck and cheek from the pre-operation cleaning (I thought this was some kind of iodine, but I don't actually know what they use to clean the skin).  Every time I got up to go to the bathroom, I had to page the nurse so she could come in and unhook all the monitors connected to my body.  That also meant re-attaching them every time as well!

I settled back into my bed.  I stayed up for a while and read my library book, and I think the nurse may have brought more Jell-o and apple juice at various times.  I was also given painkillers regularly.  With every nurse switch, I was asked about my allergies to medications.  Every. Single. Time.

I was given thyroid hormone for the first time that night, even though I'm normally supposed to take it in the morning.  I mentioned this to my nurse, but she told me it was part of her orders.  She and I also had a conversation about her friend who was recently diagnosed with cancer.  The nurse told me I was an encouragement and inspiration--even though I really don't think I qualify for either of those titles!

I finally faded off to sleep, hearing the sounds of the nurses talking quietly at their long desk outside my room.  I woke up around 7AM.  One of the nurses came in to tell me that my doctor would be visiting soon.  Shortly afterward, the team of residents who assisted with my surgery came to visit me.  There were at least six of them.  Only one spoke directly to me.  They all had enormous smiles and looked so eager and excited.  The resident asked me some questions, and then asked if I had any.  I asked about when to take my next dose of thyroid hormone, when I could go back to the gym, and possibly when I could put cream on my scar (I can't remember if I had any other questions).

My surgeon eventually came to visit me as well.  I re-asked the same questions I posed to the resident.  Eventually the hospital began the discharge process.  I can't remember if my mom and I talked on the phone or if we had planned the day before what time she and my dad would come to the hospital.  While I was waiting for them to arrive, I had a chance to wash my face and brush my teeth again, and I changed into the clothes I had worn on the way to the hospital.  I somehow managed to get my hair into a ponytail.

Unfortunately, the nurses had lost my paperwork, so my parents and I had to wait around in my room while the staff scrambled to get me out of there.  I started to feel pain, so the nurse gave me more painkillers.  They had to scan my wristband every time they gave me any kind of medicine.

I was finally officially released.  My mom went to the pharmacy while my dad went to bring the car to the front of the hospital.  The nurse wheeled me out of the building, and someone helped with getting my bags into my dad's car.  My mom called to say the prescription wasn't ready yet, so my dad and I waited.  Finally, the medicine was ready, so my dad slowly drove the car over to the entrance that led to the pharmacy, and we were off.

I don't remember much of the drive home, or even what I did once I was home.  I do remember needing my dad to help me lay my head down (he had to hold my head up while I laid the rest of my body down because I had no use of my neck muscles).  I also remember not being able to tilt my head up or down while sitting or standing.  I had to put a pillow behind my back when I sat at the kitchen table; otherwise, I was in too much pain from having to overuse my head and neck while eating.

The rest of the day is not really in my memory.  I don't know if this is from the anesthesia or painkillers, or simply because I was sleeping and the day was uneventful.  Technically, this was the day after my thyroid was removed, so I guess it doesn't hold as much gravity for me.

I am grateful to all of the staff who accommodated my needs and offered me exceptional care.  I felt like I was in capable hands during my entire time at the hospital, and I am glad that this day seems like such a distant memory.  I am proud to be a cancer survivor, and the roles of the various medical personnel who made that reality possible will never be forgotten by me.

The Day My Thyroid Was Removed, Part I

I had intended to write this post right when I got home from the hospital, but it didn't seem essential during those first few hours of recovery.  Plus, some recollection of that day is nothing more than vague, morphine-induced memory.

I woke up at 3:30AM.  I had only gotten about three hours of sleep, but I figured I'd be anesthetized in not too many hours, so a lack of sleep didn't bother me.  I was finishing packing, cleaning my room, getting Tobin's food and medicine situated so my brother could take care of him.  My parents and I left my house at 4:30AM.  My dad missed the turn for the freeway.  I was mad.  The madness mostly came from equal parts exhaustion and stress.  I'm actually glad my surgery was scheduled for so early, because I was so tired and it was so dark outside that I didn't have the clarity of mind at that point to really absorb what was going on.

We called my sister, per her request, when we were about halfway to the hospital.  She made weird cackling noises.  She made me laugh.  It was hard to hear her while we were driving, so I said goodbye.  We arrived at the hospital shortly after 5:30AM.  My dad parked the car in the paid hospital lot.  It was a little brighter outside, but the sun hadn't risen yet.  I grabbed my bag and hustled to the information desk.  There were two security guards there.  Apparently they were on duty until the hospital officially opened to the public.  They directed me down the atrium to the second door on the left.  My parents caught up with me and we made our way to the registration room.

I signed in on a clipboard.  We sat in leather waiting room chairs.  The registration clerk came to get me.  My mom and I followed her to her desk.  She typed a lot of information on her computer, took my insurance card.  Gave me a thick folder with a picture of a coastal cliff kissed by the sea.  She put an identification bracelet on my left wrist.  She walked me and my parents to the elevators and told us to go to the second floor and directly into the office on our right.

We arrived at the office.  Another couple was sitting in the chairs there, waiting.  My dad and I went to sit in some chairs across from the elevators.  My mom waited outside the office.  Another woman and her mother appeared on the elevators and made their way to the office.  My mom told them we were all waiting.  The woman asked what we were there for, and my mom told her I had cancer.  The lady hugged my mom.

A nurse arrived at 6AM, wearing scrubs and a backpack.  We saw a lot of that that morning.  He checked in the couple and escorted them through a door on the back side of the office.  My mom told me to come sit in the chairs inside the office.  The nurse took my name, then escorted my parents and me into a pre-operation room.  He told my dad he wasn't allowed to be in there yet.  My dad went to the lounge to wait.  The nurse laid a folded gown, some socks, and a plastic bag on the bed.  He told me to undress completely, and leave the gown open in the back and tied at the neck.  He also gave me a cup to pee in.  I had volunteered to be part of a research study, so this part was my doing.  The nurse told me to fill the cup before I changed.  I obliged.  Carried the cup back from the restroom to my little corner of the pre-op room.  I didn't know what to do with the cup.  I set it on a shelf.  I changed.  I laid down on the bed.  The nurses came and put a blanket on me.  They attached a tube to a slot in the blanket, and warm air blew in.  I decided then that it would probably be the best part of the day.

My dad was invited back in at some point.  I can't remember when.  Several nurses came in and out.  One of them took my pee cup.  Eventually a nurse came to put in my IV.  He was very good.  It didn't hurt at all (and I didn't even have a bruise afterwards).  He was having me open and close my fist, and then he tap-tap-tapped the veins on my hand.  He found one he liked.  Part of my agreement to participate in the research study involved giving my blood.  He took it from my hand through the IV needle.  It was weird.

Two anesthesiologists came in at different times.  The first one, a man, asked me a lot of questions--the same questions almost every nurse came in and asked me, mostly about allergies to medications.  He made me feel at ease.  He was wearing some kind of athletic zip-up.  The second one, a woman, came in wearing some kind of colorful surgical cap.  I want to say it had cats, but that's me brain filling in false information.  She asked me the same questions as the man, then told me it was time.  My parents stood up to hug and kiss me goodbye.  I started crying.  She wheeled me away and told me she makes people cry.  I told her it was my parents.  Then she said something about putting me to sleep, and put anesthetic in the IV.  We were wheeling through the hallways, out the pre-op room into one hallway, turned right into another hallway, turned right into the operation room.  I remember the ceiling.  It was white.  I remember the room was big, and I remember thinking it looked nothing like what I see in Grey's Anatomy.  I heard voices.  I heard my doctor's voice.  I felt relieved.  And then I remember nothing.

To Be Continued

Entrusting My Care to His Hands

No one tells you that when you're diagnosed with cancer, so much of the emotional turmoil and overwhelming nature of the situation won't have to do with the diagnosis at all, but with all the planning involved in having cancer.

My brother commented that it seems unfair for people with cancer to have to plan and pay when they didn't choose illness and all of its life interruptions.

There's the taking time off of work.  Getting shifts covered by co-workers.  Making calls to your insurance company (I thought I hated them before--true medical crisis takes hatred to a whole new level).  Coordinating finances with medical providers.  Tracking down a clear retainer to use in lieu of your nose ring so the piercing doesn't close while in surgery (wait, that one's just me?).

I stare at my computer, switching back and forth between my online banking homepage and my insurance company's summary of benefits.  I try to figure out how this is all going to work.  Why doesn't anyone tell you how expensive and annoying cancer will be?  It's so distracting that you forget why you're making the calls and perusing the websites and adjusting work schedules in the first place.

I contacted my boss earlier to let her know that I will be having surgery on Monday, and that I will need to take next week off if it's not a problem.  Her response made me cry, because it reminded me that this is about my cancer.  She told me she's proud of me and that I'm going to kick this thing's butt.

I was thinking about my sweet Tobin, and how much money I've spent on him over the years without ever batting an eye.  When it comes to caring for him, money is never a question or issue.  I'll do whatever it takes.  And then I realized that I need to extend that same grace towards myself.  I am worth excellent treatment by a skilled physician.  I am worth the cost.  Why do I place his needs so high, while so easily discounting my own?  Why do I apologetically ask my manger for time off to treat my cancer?

Reaching out to people for financial assistance has been hard and good.  Hard, because I feel guilty asking people to help me fight cancer.  Good, because it forces me to not fight cancer alone, which I would be prone to do.  I would isolate myself and place the burden on my own shoulders and not want to inconvenience anyone.

But I realize that instead of being inconvenienced, people experience great joy in providing support.  When it comes to those we love, we think about doing the best for them no matter the cost.  I think sometimes I approach God in that same way, feeling like I am an inconvenience and burden or not believing in the gravity of His love for me.  Having Tobin has allowed me to see that my love for him is not only mirrored by God's love for me, but that God's love is so exponentially beyond the love I'm capable of giving anyone or anything that it's truly beyond my comprehension.  And He is the one in whom my well-being and care is entrusted.

I was told to not let red tape or insurance hoops stand in the way of the best care.  I'm terrified to have my surgery done on Monday, not because they're cutting me open, but because of the bills I know will be arriving in the mail in a few weeks.  But, I'm entrusting myself to the hands of the Greatest Physician and Provider, and trusting that He knows and sees my needs and already has a plan.

Jesus, calm my nerves.

Getting the Treatment You Deserve

I stumbled upon an article last night, and one part in particular made me start crying.  I've had insomnia since Tuesday night, the day before my official diagnosis, and most of my major stress during the past few days has been due to thinking about missing work, figuring out finances, finding surgeons in my insurance network that I actually trust, and somehow trying to coordinate a lot of first-time consults to make a decision about who will do my surgery.  Reading this reassured me:

"Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine--but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable."

-Jeff Tomczek, "The Things I Wish I Were Told When I Was Diagnosed With Cancer"

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 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.