My Esther in the Palace

When Esther married King Ahasurus, I’m sure she had no clue what purpose this union would bring. Here she was, a young Jewish woman in a foreign land and she became the queen of Persia.  Eventually, though, she understood why she was in the palace and it was so God could use her to save her people, the Jewish race.

At one point or another, we’ve all had an “Esther in the Palace.” Someone who God put in the perfect place, at the perfect time on our behalf.  I would like to pay tribute to my, “Esther.”

When my disease first began, I had an amazing rheumatologist who went above and beyond for me. My other specialists were a different story.  My hematological and immunological issues were a complete mystery and those doctors didn’t know how to treat me. Therefore, they chose not to.  My rheumatologist did his best to be my hematologist and immunologist as well, but I really needed those specialists. My parents and rheumatologist needed to begin thinking of a solution since it was crucial I had a hematologist and an immunologist.

My mom and dad were at a critical crossroads when it came to my care, but they were new to advocating for their child in the medical world.  They didn’t know how to push, where to push, or who to push.  Little did they know, there was an “Esther,” in the palace.

My uncle, James Compton, was a pharmaceutical representative in Marietta, Georgia.  My uncle, aunt, and their family had always lived in Georgia; that’s where their roots were.  So, when my uncle’s pharmaceutical company transferred him to Raleigh, North Carolina, the Georgia family didn’t understand what purpose this job transfer could possibly have, but my uncle and aunt’s purpose of moving to North Carolina was revealed in due time. 

One of the hospitals James routinely contacted was Duke University and the department specialty that he contacted was hematology. Over the next several months, my uncle shared my story with the hematologist who was his contact.  He told her how puzzling my case was and the dilemma my hematologist and immunologist had created for my parents and me. After a year of discussing my medical case with James, the specialist asked my uncle if my parents would consider bringing me to Duke for a visit to be seen by her and Duke’s immunology department.  Uncle James assured her that not only would my parents bring me there, but would move mountains to guarantee I received the absolute best medical care.

Before he could discuss this exciting news with my parents, his pharmaceutical company informed him he would be transferred back to Georgia.  This didn’t diminish the connection my uncle made with the Duke hematologist though. He decided immediately whenever my parents brought me to Duke, he would come to North Carolina to act as a liaison between my parents and the hematologist.

When he contacted my mom and dad to explained what transpired, my parents felt as if they had been thrown a lifeline.  This could be the solution they had been waiting and praying to receive.

           The first day at Duke, my parents saw very quickly this opportunity was an answer to their prayers.  The hematologists and immunologists at Duke were so caring and took an interest in my case my previous hematologist and immunologist didn’t.  During this visit, my sweet uncle was the exact encouragement my mom and dad needed.  The nature of his job allowed him to advise my parents in what ways to push and advocate for me.  His gentle demeanor calmed my parents’ hearts and minds, giving them clarity in the midst of a difficult situation. 

At the end of the visit with the specialists at Duke it was decided I couldn’t continue to be a patient at the current facility in Ohio where I was being seen and get the care I needed.  The hematologist at Duke knew of an excellent hematologist at Nationwide Children’s hospital she wanted me to see. While Nationwide Children’s didn’t have an immunology department at the time, the quality care I would receive from this hematologist would be more than enough for the time being.

God used my hematologist in a mighty way.  He never gave up on finding a treatment to which my body would respond. He turned my health around and while I was still fragile, I was stable.  A few years later, he shared the news that the hospital was finally getting an immunologist and he needed this specialist on my medical team.  Whenever he would begin at Children’s, I would be one of his first patients. 

As I began seeing the new immunologist, it was apparent that along with my hematologist, he was the exact addition I needed.  After several visits with my immunologist, he realized I had been seen at Duke University and revealed that’s where he had completed his fellowship program.  My mom then asked him what doctor he did his fellowship under and we were surprised to discover he was taught by the very immunologist I had seen at Duke.  Then the astonishing detail came to light that he was at Duke at the same exact time I visited the hospital.

About nine years after I began seeing my immunologist, he sent my case to the National Institute of Health, (NIH). My doctors at the NIH have told us multiple times how amazed they are that my physicians had no idea what disease they were treating and yet they did everything exactly right. 

          None of it would have been possible if God hadn’t put my uncle at the right place at the right time.  He was the key to unlocking the beginning of God’s plan for my medical journey.  If he hadn’t been sensitive to God’s guidance just as Esther had been, then my story would have been devastatingly different. 

Uncle James went to be with the Lord 15 years ago, but I’d like to think he’s had a glimpse of my life, and he knows the purpose and impact he had in it.  I have no doubt if he were here today he’d give me his famous grin, refusing to take the credit, but giving all of the glory to God.  May I never dwell on all of the “what if’s” in my life, but instead always thank God, He placed an “Esther in the Palace,” for me in the man of James Daniel Compton. 

"This Blog Post is Dedicated and In Loving Memory of James Daniel Compton"

Medicine or No Medicine?

We all have pet peeves.

One of my biggest pet peeves is when someone is sick and they don’t do what they need to do for their health and well-being to get better.  Or they know they need to do something proactively to stay in good health and they don’t do it. Trust me, there are tests and procedures I don’t want to do or they terrify me, but since I know it’s for my well-being I do it. The funny thing about personal pet peeves though, is they usually stem from something we had to work through and learn for ourselves.

When I was eight years old my medical treatment had already been a constant trial and error process to help with my extremely weak immune system. This included the amount of medicine I was taking, which was about 10 types of medication each morning.  To say I didn’t like this part of my morning routine is an understatement. It was so annoying I had to get up earlier each day to have time to take my pills.  It was also frustrating I had to stand in front of my medicine for about ten minutes just to get the guts to take the medication— because a lot of it was pretty disgusting. 

Growing up my mom did everything she could to make living with a disease easier for me.  Each morning she would lay all of my medication out on a napkin and all the liquid medications were in syringes ready to go.  There was one liquid medication I could only take mixed in fruit punch, so there was also a paper cup full of juice present as well.

I hated the extra time it took when I could be doing other things.  I was so tired of choking down vulgar medication— some of which, I was sure was unnecessary anyway.  One morning, I decided I couldn’t take it anymore and I would throw my medication away. Thankfully, I wasn’t completely ignorant, because I knew exactly what medicine to take to keep me alive and functioning.  But the rest of it went in the trash.  For the next two weeks, I carefully wrapped up the pills in the napkin, stuffed them in the empty cup of fruit juice, and threw it away.

One Sunday evening I was in church and it a couple of weeks had passed since I had been throwing my medicine away.  I have no clue what my pastor was preaching, but serious conviction came over me.   I just had to tell my mom what I had been doing and I had to do it right then.  So, I wrote her a note and it said something like this:

Dear Mom,

I have something I need to confess to you.  For the past two weeks, I have been wrapping my medicine in a napkin and throwing it away.  I’m very sorry and you can punish me anyway you want, but I hope you’re proud of me for being honest. I love you very much!

Whitney

It’s comical to think back on now, because I remember passing the note to my mom, which she accepted with a loving smile, so sure I had written her a precious note.  I watched as her expression change from one of doting, to one of shock, and to one of anger.  She then looked at me with an expression that said, “you’re going to get it when you get home,” as she passed the note to my dad.  Yes, it’s comical to think about now, in fact, my mom even kept that note I wrote 21 years ago.

It wasn’t comical back then.

 It might seem a little silly, but I know adults who have a difficult time taking medicine, let alone an eight-year-old.  This was a difficult lesson I had to learn as a child.  I had to come to terms with the fact at a young age that sometimes I’m going to have to do things I don’t want to do or things I don’t like to do, but I must do those things to be the best person I can be.

Now as an adult, I see it in a clearer way.  My body is a temple of God and God expects me to take care of my body so it can be the absolute best it can be.  In my case, I need to take medication to make my temple the best it can be.

Thankfully, now I can take all of my pills with no issues and in one swift swallow, but as a little girl it took some time.  With the gentle guidance of my parents and the mercy of God, I finally chose to be better, I chose to grow, and I chose to be More than my mountains.

What “medicine,” in your life do you have to overcome?  At some point in our life we all have something we don’t want to do, but we know it’s the right choice to make, so we can be Better, and we can be More.  At the end of the day, it all comes down to this very simple question: Medicine or no Medicine? 

Things I Think Doctors Should Understand 

About Their Patients: Part III

About a month ago, I wrote a post about how important it is for people to be kind to each other especially treating individuals with disabilities with compassion because of the extra insecurities they carry.  I shared the Pinterest quote, “You never know how long your words will stay in someone’s mind even long after you forgotten you spoken them.” This quote also rings true with doctors and their patients.  However, not only do their words stay with us, so do their actions.  That’s why this final point is not only necessary to have a good doctor/patient, it’s vital.

3.  In Your Excitement to Get a Teaching Moment, Please DO NOT Treat Us Like a Human Petri Dish:

This is a tough one to elaborate on, many times I’ve heard the phrases, “You aren’t text book, Whitney,” “We talk a lot about your case, Whitney, because it’s so rare,” “You’re a celebrity in the immunology world, Whitney,” “You’re very unique, Whitney.”  I understand what they are saying— I mean I have such a rare condition that for the longest time I was the only “known” one in the whole world with this disease.  Of course, I’m going to be a rare and unique “teaching moment,” to any doctor I see.  In fact, most individuals with a Primary Immunodeficiency will be “teaching moments” for doctors because in the medical world because we aren’t “horses,” we’re “zebras,” and we understand this. 

However, when my doctor brings in another colleague, a resident,

or a fellow, just so they can show them my medical abnormalities, even though I oblige them and I might laugh it off, it sometimes takes a toll on my emotions and self-worth. There have been several instances I’ve been sitting in the examining room; my doctor comes in the room tells me I look good and then asks if the resident or fellow they are training can look at my warts or my psoriasis. I would love to tell you this doesn’t affect me, but it does.  My heart often wonders if what they are really telling me is I look “good,” for someone with a rare disease that produces rare abnormalities.

         I have a specialist who has been treating me for almost 15 years.  We have a great relationship and I know he truly cares about my well-being.  However, his actions toward my deformities haven’t always been so tactful.  Nearly every single appointment he would ask to see my feet.  When I agreed to his request he would back away from me, standing as far from me as he possibly could with his hands behind his back, craning his neck to get a good look at my “abnormal feet.”  You may think I am exaggerating or making this is up, but I assure you it was a normal occurrence for many years. 

         One day when I was about 16 or 17 years old he asked me his normal request, “Uh, Whitney can I see your feet?” 

         I of course obliged, but on this day, I was quite fed up with his insistence of observing my “scientifically abnormal feet,” because I knew what was sure to follow. I turned my back to him to take my shoes and socks off, so I didn’t know for the first time ever he was standing right beside me.  I took the first shoe and sock off without a hitch.  I then took the second shoe off, but then had trouble with my sock.

It was stuck. 

So, I pulled and pulled and then finally yanked it off as hard as I could.  The sock flew behind me and hit my doctor right in the face.  I don’t think I had ever had a doctor look at me so shocked and offended until then.  I cracked up, his nurse practitioner cracked up, and my mother looked like she was about ready to clock me. 

However, this incident was a breakthrough for my doctor. Now he and I can look back on the incident and laugh. However awkward that appointment was, it helped my specialist realize he needed to treat me with more compassion.

I know my doctors aren’t being malicious; they would never do anything to hurt me.  But they are scientists and in their excitement to potentially learn something from my condition, they sometimes forget I’m already insecure and self-conscience of these deformities; therefore, their “teaching moment,” makes me feel like a medical oddity on display.  I know these teaching moments are essential for scientists to have medical breakthroughs so more people can be helped.  The research I have agreed to be a part of will assist doctors in finding new treatments and better quality of life for individuals living with MAGIS Syndrome— this includes my children who may be born with this gene mutation.  I’m so grateful I can be a small part in helping those medical breakthroughs come to pass.

However, I would encourage doctors to remember when those teaching moments come to go the extra mile to make us patients feel comfortable and understanding the vulnerabilities we might experience when being exposed in that way.  If our doctors do their best to make us feel like a person when a teaching moment comes, then I promise not only will our doctor receive purpose from it, so will we— and nothing can be better than that.