What to Do When the Storm Comes

         My heart goes out to everyone who has been effected by these heavy rains.   We, in Scioto County, are now seeing the tumultuous rains that have caused devastation in other counties and states.  The only thing people can do is heed the information and advice given to them by their local officials and weathermen, then prepare the best they can.

         One of the most difficult places to be in is to know a storm is brewing, but not know exactly when it will hit, the level of force it will have when it arrives, or the damage it will leave in it’s midst— whether the storm comes in the form of a natural disaster…or a chronic disease.

         When word began circulating there would be torrential rain that could cause flood waters, the first thing most people did was watch the weather to see what their meteorologist was predicting would happen. They gathered all of the information so they could know what to possibly expect and how to prepare.  

This is exactly what you should do if you’re diagnosed with a chronic illness.  Talk

with your doctor about what symptoms are possible with your disease and what treatments would be recommended.  Research those treatment options so you know what medications you're comfortable receiving.  Glean from the advice and encouragement of individuals who have been on a similar medical journey.  The more information you have about what could happen, the more prepared you will be to face

the storm.  

         Once people knew how to prepare for the potential flood waters, then they took action.  They may have gathered supplies in case they had to remain at home for an extended period of time due to bad roads.  They could have had to book a hotel to escape high flood waters that could potentially cause damage to their house.  Or some maybe had to take the same precautions my household did.  Which was make sure the sump pump was turned on and working in the basement as well as keep an eye on the rising creek waters around our property.

         Whatever the action people had to take against the severe weather is what lessened the the trauma it caused.  The same rings true when you have a disability.  Trials are sure to come when you have a chronic illness, but if you prepare, the heavy burdens will lessen when difficult times come.  The first action I recommend and it’s the most powerful and effective preparation of all— is prayer. Ask God for strength and perseverance to overcome the mountains before you and I promise He will give you exactly what you need. 

Secondly, I urge you to write down everything you can about your medical care.  There’s so much to recall and no one can remember everything, especially during a crisis.  What I suggest is creating a “Medical Album.”  Simply purchase a regular picture album, take 3x5 cards and write your medical information on them, and then place them in the plastic sleeves.  

I have 3x5 cards that list my physical stats, diagnoses, medications, allergies, surgeries, and every physician with their contact information.  You may find a better system works for you when it comes to recording your medical history, but the action of having important medical information on hand for your doctors right when they need it, will decrease the impact of the storms your disease may cause.

The most important preparation these flood victims did was gather their loved ones close for support and to make sure they were safe. They knew these were the people who knew them the best, and would “hold their arms up” when the storm came.

         Just as the most important action for the flood victims was to hold tight to their loved ones, when you suffer from an illness, you must do the same.  It doesn’t matter how old you are, when you have a disease, you need a support system. 

         When the burdens of your disease become too much to bear, allow your family and friends to “hold your arms up” for you.  Allow them to be an extra set of ears for you at a doctor’s appointment. They may need to take care of you while you’re sick.  Or you may need their advice when you’re unsure of what treatment to take or what doctor to see.  Whatever the case maybe, use your support system, because God gave you exactly who He knew you would need when the waters begin to get high. 

         It’s difficult to know a storm is coming, but when it hits what will really matter is how you react to it— whether it comes as a flood or a disease.  The key is to know what to do when the storm comes. Get all the information you can. Use your resources and get advice from others who understand. Then take that information and put it to action so you can withstand the strongest of impacts. Lastly, cling to your support system God gave you so they can help "hold your arms up," through difficult trials.  If you do these things then when the fiercest of storms come in your life, you can look it directly in the eye and boldly say, “Because of God’s strength- I am the Storm.” 

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?