The Imagined Life vs. Real Life

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

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

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

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

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

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

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

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

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

What My Schnauzer Really Means To Me

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

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

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

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

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

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

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

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

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

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

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

Cancer's Lessons on Love

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

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

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

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

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

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

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"

The Day I Was Diagnosed with Cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What If I'm the Five Percent?

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

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

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

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

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

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

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

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

Birthday Avoidance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But You're So Young

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

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

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

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

Hashimoto's thyroiditis.  Faulty thyroid.

PCOS.  Faulty ovaries.

Insulin resistance.  Faulty cells.

Meralgia paraesthetica.  Faulty nerves.

Chondromalacia patella.  Faulty bones.

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

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

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

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

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

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

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

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

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

The Slow Life of Recovery

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

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

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

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

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

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

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

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

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

The Unhappy Mind of an Unhappy Thyroid

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

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

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

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

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

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

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

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