Bible Anxiety

The following is a post that I was honored to write for Shanna Noel's blog at www.shannanoel.blogspot.com:

I was raised in a traditional, conservative, Southern Baptist household by two parents who love the Lord and who both love books. I was raised to love the written word, to love the books that hold them, to respect and honor the men and women who had given themselves to the practice of putting pen to page. The Bible is the Word of God, and is therefore the ultimate book deserving our love, honor, and respect.

In our home, respecting a book means taking care of that book: not breaking the spine, not folding the corners down to mark our page, and ABSOLUTELY, POSITIVELY NO WRITING IN THE BOOK. The goal of reading a book is to ensure the book looks as pristine after you finish reading it as it did on the shelf of the bookstore. There should be zero sign that the book has been touched, opened, or manipulated. If we were required to underline or mark up a text for school, my parents would buy two copies of the book: one for me to 'ruin' and one for us to preserve on the shelves of our home. Any and all underlining must be done with a straight edge (what my Dad has always called rulers) in a blue or black ballpoint pen that is used throughout the entire book so that the book's appearance remains consistent. Notes should not be taken in the margins. They should be written in a separate notebook with a reference to the page, line, and quote being discussed. Doodling is strictly forbidden.

Some of you may find this a bit obsessive-compulsive and a bit odd, but it is what I grew up knowing. Not crunching and marking up books is how we showed our respect to the books. This was especially true of God's Word. Our family has one Bible that is the designated Family Bible where births, deaths, and baptisms are gently recorded. One year for Christmas, my parents gave my brother and me Bibles with their favorite verses carefully underlined for us to know where God had spoken to them, and this remains one of my most priceless possessions.

You may be wondering what this has to do with art journaling and using our Bibles for art and meditation. If you have seen my Instagram feed, you'll know that my first artsy page in my Bible caused me physical pain. I was nauseated, jittery, and anxious. I had goosebumps, and the hair on the back of my neck tingled. I had thought that by using one of my older Bibles, I would be ok with the art and not worry that I was defacing and messing up the Word of God. I was wrong. My goal was to not spend any money for this new-to-me art form. I would only use what I already had, and that included my Bible. I love scrapbooking. I enjoy art journaling, and the concept of combining these creative outlets with my daily Quiet Time called to me (I mean, seriously...making an inky mess and calling it worship and prayer? You had me at 'Hello").

My art journaling has developed over the last few years as a way for me to cry out to God. I play with color and scriptures and song texts when my MS-brain fog prevents me from forming coherent thoughts and making complex decisions. My art journal is a place where I call out to God and meditate on His Word without fear of messing something up. In a separate space (my art journal), I am not afraid to try new things. I do not worry about what will bleed through and ruin the page behind it. I focus on the words, the colors, the textures, and it is all good.

I admit that after my first anxiety-ridden page in my favorite large print Bible, I set that Bible aside and ordered an OFFICIAL journaling Bible from amazon. I did this not because I wanted to spend the money, but because I knew that this Bible art journaling 'thing' has me excited to study and read God's Word again. I knew that if I invested in a dedicated Bible that I gave myself permission to write in, then I could enjoy the freedom of prayer and worship in my Bible without the anxiety, and that my precious Life Application Bible could return to its honored place on my shelf. I knew that I would have a place where I can make mistakes, where I can make a mess, where I can ruin a page just by covering the back with gesso. I knew that I could be free to use whatever supplies I have, be it pen and pencil today, or watercolor and stamps tomorrow, without the fear of ruining God's Word. I admit that there are some entries I like more than others. I admit that I have made mistakes. I admit that I have ruined a page or two. But that is ok. God is happy with my work. He is happy that I am spending time with Him. He is happy that I am creating and meditating on His Word. For every verse and passage that I read and study and personalize, I am growing closer to Him and abiding in His love. And that is a good thing.

If you take nothing else away from reading this post today, I hope you know this: God loves YOU. He wants to spend time with you. He wants you to know Him. If giving yourself permission to draw in, write in, or paint in a Bible is what it takes to encourage you to spend time reading His Word and to draw closer to Him, then please do it. We are all different. We all create art differently. We all have different handwriting. We all have different supplies and talents. We all have different budgets. None of that matters. All that matters is that you are reading and praying and worshiping God. This is your relationship with Him, your learning, your creating, your time. And in the end, the only One whose approval you need is His.

A Summer of Travel of Feeling Almost Normal

As y'all may already know, we spent 2+ months exploring the cooler regions of America this summer. We left May 16 and returned July 16. A week later, we drove back to Nashville for a family event, and we have been in and out of town since. If you are remotely interested in our itinerary, we drove from the Gulf Coast straight to Vancouver, boarded a cruise ship for 9 days to Alaska, returned to Washington, and drove and camped our way back across America for the next several weeks. Stops included Glacier National Park, Yellowstone National Park, Cody, Wyoming, Deadwood and Rapid City, South Dakota, Minneapolis (complete with a 'slight' detour to Omaha for the College World Series Finals), Wisconsin Dells, Chicago, Dayton, Ohio, Nashville, Tennessee, and then back home. We had many fun and a few not-so-fun adventures along the way, including a broken axle on our way out West, requiring an overnight stay in the parking lot of an abandoned gas station a la Children of the Corn. Photos with a day-by-day commentary are on Instagram (cdpeck).

Due to the FunFunFun of my pseudotumor, I had my third spinal tap the day we left Alabama. I spent the first 48-72 hours of our road trip horizontal in the front seat of the truck, squishing my oldest's legs. The spinal headache wasn't too terrible, so I was able to at least be in my family's presence without making everyone miserable. Medically, I felt better with every latitude line crossed. The further North we drove, the less I felt like I was walking through sludge, and the more energy I had. Daily naps became optional and were only required 1-2 times per week instead of my usual daily requirement. I was able to hike. I was able to ride horses. I was able to ride my bike. I WAS ABLE TO DO CARTWHEELS WITH MY GIRLS. I had not successfully done a cartwheel in 10 years. Too much spinning and dizziness. This was the first medical miracle of our trip. Our God is so very good.

I rarely, if ever, needed my cane. We always had it available, but it remained very lonely under the back seat of Monstro. I loved being outdoors. Aside from the cruise, we camped everywhere we went. Granted, we were camping in our very nice RV, but we were still out in nature with the windows open enjoying the breezes and the crickets at night. It was glorious. Never too hot. Never too cold. I felt like Goldilocks. Everything was juuuuust right.

Overall, I felt better than I have in the last 2-3 years combined. I almost felt normal. I had forgotten what normal was. I was able to be a Mama. I was able to enjoy our trip. I was able to feel human. I really didn't want to come home.

Operation Snowbird

If you have ever seen my instagram feed, then you know that I love to travel with my family. Exploring God's creation is one of my joys in life. My husband is a much more fun person when he is on vacation. My children learn more when seeing and experiencing cultures and sights that are unfamiliar to our Southern way of life. My dog thinks she is the co-pilot for all of our road-based adventures. We all thrive on seeing the world together.

Over the last few years, my MS has made travel more difficult. We have had to get more creative with our journeys and take more time resting at our destinations - which completely goes against the see-everything-do-everything-we-can-always-sleep-later mentality we had adopted pre-diagnosis. We hang out in our hotel room. We order room service. We swim in the hotel pool. We play board games. We don't get to the Magic Kingdom an hour before it officially opens just in case it opens early and then close the park down at 2AM anymore. We sleep. We get there when we get there. We enjoy our favorite rides and skip those with lines or those that we don't care about. We take care of our bodies more.

How does this translate into exploring the remote corners of the globe? We cruise a lot. Cruising is affordable. Cruising is restful. Cruising has as much or as little activity as we want. Even on a port day in Argentina, we know our time is limited. We can still hustle about and see and do everything we can, but there is a finite stop time. We have to be back on the ship at a pre-determined time, or we will be left behind. Once back onboard, we can crash. The Girls may go to Kids' Club and hang out with their new-found friends (who are often also homeschoolers, given the itineraries and times of year that we cruise) and compare what educational field trip excursion each of their parent's had forced on them that day. Bill may go wandering the ship to find a new corner to hide in and read a book on his ipad. I may take a nap. We all meet again for dinner and maybe a show (the local performers that add to the cultural immersion tend to be our favorites - ex. The Pampas Devils, a group of tango dancers and gaucho performers from Argentina, or step dancers in Ireland, or belly dancers in Egypt). We can go to bed early. And we can do it all again tomorrow in another city or town, without having to worry about how late will we be up driving to get to get there and will we find a hotel once we do.

The other major travel adjustment we have made is that 3 years ago, my husband bought a 5th-wheel travel trailer. Some men buy Porsche's and 22 year old blondes for their mid-life crises. My husband bought a Big-A$$ Truck (aka The Monstrosity) and an RV (aka Monstro). We have taken the RV cross-country twice and to see cousins and aunts and uncles a multitude of times. This summer, we are planning a third cross-country trek, this time to experiment with my MS. Last summer I was almost non-functional. The heat and humidity here in the South kept me couch-bound or pool-bound most of the summer. This summer we are headed north - north to the mountains, north to a cooler climate, a higher altitude, and a lower humidity. The goal? To see if I can function better. This was supposed to be a controlled experiment - same medicines, same exercises, same Me, with only our location being the new variable - but given the medical events of the last few months, our controls have gone out the window. Regardless of those new parameters, we are going. We'll be living in the RV, stopping at National Parks and State Parks for days-weeks at a time. We'll see some family and hopefully some friends. We'll hike. We'll bike. We'll learn about our nation's geography and history. We'll be "Learning through Living" (my high school's motto). And rest assured, I'll be sharing pictures along the way - definitely on Instagram (username: cdpeck) and hopefully here on the blog as well.

Social Security, Part 2

The next step in obtaining my entitled Social Security benefits required a visit to a Social Security-approved Psychiatrist to ensure that I was mentally able to make decisions regarding my own medical care. If you remember from yesterday how much I do not want to be on our government's retirement welfare system, and if you know how little I tolerate stupidity, you will understand why I was not the best-behaved patient at this appointment.

The psychiatrist is a lady maybe 5-7 years older than me. She was wearing a suit and had perfectly coiffed hair and nails. I forget what I was wearing, but I did dress professionally. From the moment I walked in the room, her demeanor was condescending and 'I'm-smarter-than-you.' She was polite, but not friendly, and she immediately began her official questioning.

Background: As part of both my pediatric and my ER training, I had a lot of psychiatric exposure. I am fascinated by the true crazies in the world. The wilder the hallucinations, the more fun I have. Overdoses and suicidal patients are my ER norm. Angsty teenagers acting out after a fight with their boyfriends or moms were everyday occurrences. I sought them out. I enjoy them. I took care of them. I know the game. I know the routine. I know the questions to ask and the 'right' answers to those questions. I did not become a psychiatrist, because I am too ADD with a need for instant gratification. Overdoses? Give me the narcan and charcoal, and let's go pump a stomach. Chronic depression and eating disorders? Let me get you medically stable then pass you off for the next few weeks-months of therapy. Not that I don't know how to do that therapy...I just don't enjoy it. I like instant fixes with rapid results.

Now back to my appointment with the Social Security-appointed psychiatrist. We started out discussing my basic information: name, demographics, why-am-I-here-today, that kind of stuff. And then she moved into familiar territory. I swear, the woman could have been one of my residents. She quoted the textbook almost verbatim.

Psych: Why are you here today?
Me: Because the disability company and Social Security made me.
Psych: You don't want to be here?
Me: Not really (I'm still trying to be polite at this point, but my inherent snark is fighting for an excuse to come out).
Psych: What do you do for a living?
Me: I'm a Pediatric ER doc. I work at _____, but I can't go back to work right now since I was diagnosed with MS.
Psych: Oh! You're a doctor, too?
Me: Yep. And I see a lot of psych patients in the ER.
Psych: Really? That's interesting...Did you graduate from high school?
Me: (I'm unable to hold the snark back any more) Seriously??? I just told you I'm a doctor like you. I actually have more training than you, because I actually did a fellowship, and you only did your residency, and you're asking if I graduated from high school?!!!
Psych: Yes. I am. Did you graduate from high school?
Me. Humpf. And I graduated Magna Cum Laude from Vanderbilt, too, before going to med school at BMS.
Psych: So you do have a high school diploma?
Me: (totally over this 'interview' by now) YES
Psych: Are you depressed? Do you want to hurt yourself? Have you thought about killing yourself?
Me: Nope.
***Insert Mini Mental Status Exam Here***
Me: (during Mini Mental) You do know that I know all these questions and that I can quote the questions and answers to you faster than you can ask them officially, right?
Psych: Why is that?
Me: Because I asked them every single day in my job in the ER. Pediatric ER doc, remember?
Psych: Oh yes. That is right. Continuing on. (And here she continues the Mini Mental, despite my telling her the questions and answers in advance. My patience for her was nonexistent at this point.)

When I got in the car with my husband to go home, he rolled his eyes at my lack of cooperation in the psychiatrist's office. He knows me and my lack of tolerance for stupidity, but he did remind me that she was responsible for determining if I was mentally competent enough to qualify for Social Security. When I reminded him of how much I did NOT want the benefits, he knew well enough to just let the subject drop. I think he was afraid I would take my snark out on him.

Sadly, a week or two later, I was fully approved for Social Security, and I've been receiving monthly checks since. I still hope and pray that I can return to work someday, but for now, this is our normal. God is good, and He continues to provide for my family each and every day...even if I don't like the method.

Social Security: Part 1

Part of the whole long term disability applications requires conversations and meetings with Social Security. It's the insurance companies' rules. They don't want to pay out a lot of money, and a 35 year old physician on disability sets off every one of their alarms. If you are approved for their policies, then they require you to apply for Social Security. Now remember, at this point, I still intended to go back to work. I had zero intention of being on disability forever. God called me to Pediatrics, and that is where I want to be.

I avoided, stalled, and procrastinated dealing with Social Security as long as I could. I do not want to be on it. One day, Social Security called me. At home. And insisted I have a real conversation with them. I couldn't hide any more. Following is a replication of that conversation, as I remember it:

SS Lady: You do realize you are entitled to these benefits?
Me: I don't want them. I am 35 years old, and I plan to return to work someday. Older, sicker people need that money.
SS Lady: But you are entitled to that money.
Me: But I don't want it.
SS Lady: But you worked and saved that money. You are entitled to it.
Me: But I don't want it. I want to work. I do not want to live off of the government.
SS Lady: But it says here that you have 2 children. What about them? They are entitled to benefits, too.
Me: I am married. My husband has a good job with excellent benefits. I intend to go back to work when I am better. I don't need Social Security, and my children definitely do not need it.
SS Lady: But that might not always be the case. No one ever expects divorce, but your husband may one day decide to leave you, and then you won't have his benefits, and then you'll need this money that you are entitled to.
Me: Excuse me, but that is not going to happen, and even if something does happen to him in the future and if I do ever need this money, THEN I'll apply for it. Until then, I don't need it, and I don't want it.
SS Lady: But you and your children are entitled to these benefits.
Me: So you are telling me that despite the fact that there are people who actually need this government money to live that are being turned down for benefits, and despite the fact that I want them to get this money instead of me, I have no choice but to take it.
SS Lady: Yes. Because you are entitled to it, and they are not.

Disability 101

When I left my ER at 7AM December 26, 2009, I fully expected to return to work that night. When I was admitted to a neighboring hospital an hour later, I thought I would be returning to work after discharge. When I was discharged unable to walk without a walker, I knew I would have to file for FMLA (Family Medical Leave Act) and take a few weeks off to recover. I still fully intended to return to my job in the Pediatric ER, seeing patients and supervising medical students and residents. 6 weeks later I was still unable to walk past the stop sign at the end of our street, and it was then that I knew that my working life would have to change...but I STILL INTENDED TO GO BACK TO WORK.

I met with the hospital CEO to discuss how and when I could return. Per the American Disabilities Act (ADA), work places are required to make adjustments and allowances to help you do your job. My neurologist at BMS had already signed off on my state disability papers, because sadly, multiple sclerosis is a no-brainer. Our state sees the MS diagnosis and automatically approves applications. My hospital had been saying they were going paperless and to all-electronic charting for 3 years. It had never happened in the ER, even though the rest of the hospital had converted within the preceding 6 months. I asked that the ER make the change so that I could rest my hands and type instead of writing (At this time, even my signature was 'off.' My fine motor control was diminished, and typing/using the computer was a legitimate alternative to the writing we did so much of in the hospital (remember that CYA medicine discussion?)). The CEO refused. I asked to work part-time for a few months while I did rehab to regain my strength and endurance. She refused. I asked to work staggered shifts or to be the evening double coverage (which we were already paying outside docs extra to moonlight and cover the busier times). Again, she refused. She refused each and every ADA modification I requested. Her quote, "If you cannot meet the obligations spelled out in your contract, then your contract is null and void, and you will no longer be an employee of this hospital." Bottom line...major ADA violation.

Now I could have contacted an attorney and sued her and the hospital for ADA discrimination, but honestly, I just didn't have the emotional ability to fight that battle. I also knew that any money that I won, and any money that the hospital spent fighting me, would come at the detriment of the children that I have dedicated my life to caring for. Money at the hospital was tight, and I wanted our local kids to have more ICU beds and operating rooms and oxygen monitors than I wanted to fight a legal battle for my 'rights.'

So what did I do? First of all, I prayed. I had been praying throughout this whole ordeal, both alone and with my husband and family. I prayed a lot. I prayed for God's peace that passes all understanding. I prayed for our family's finances. I prayed for health. I cried out in frustration, knowing the Holy Spirit could interpret my cries. And God provided an answer...an answer that we thought, at the time, would be a temporary solution, but now, 4.5 years later, we are still living under. I applied for long term disability from the hospital. I cashed in a long term 'own occ' disability policy we had bought years before ('Own occ' basically says that if you are unable to continue in your chosen occupation, for me, specifically, Pediatric Emergency Medicine, then you'll be paid x percentage of your salary for life. Most insurance firms don't offer this anymore, and most people have never heard of it. Of those that have, most never bother to sign up, figuring they'll be a surgeon or anesthesiologist or family practitioner for life, because that's our calling, and that's what we spent so many years training to be.).

After several more months of paperwork and appointments, I was finally approved for both policies. My family was able to start digging out of the mountain of debt we had acquired trying to get through the previous months without my salary and with mega-hospital bills starting to come in. We are still working on that debt, but I know God will continue to provide. And God does have a sense of humor. I was and I believe I still am the ONLY physician to ever leave our hospital system on disability. I was 35 when I was diagnosed and went on disability, and by the time my hospital disability checks stop, the hospital will have paid me several times more than they would have if the CEO had just allowed me to continue working part time. My monthly checks from them are actually still higher than what my part time salary would have been. And that makes me smile. God wins every time.

Not So Mysterious Ways

There's a common saying in this world that 'God works in mysterious ways.' I believe this is true, but I also believe there is a counter statement to this, as well: 'Satan works in not-so-mysterious ways.'

I've told y'all before that I was diagnosed with multiple sclerosis in 2009. Since then, my life and the lives of my family members have been unpredictable and sometimes frustrating. We cannot predict when I will have a Bad Day. We have, with time, recognized that if I am very active or if I 'push' for 2-3 days, then I will have to crash and rest for, at least, 2-3 days afterward. We try to schedule events accordingly, but part of the annoyance of MS is how you never know day-to-day how you will feel. I might do everything 'right,' and then still wake up the next day dizzy and unable to lift my head off the couch, much less walk around the house and do chores. My husband is amazing. He is patient. He is kind. He is the 'nice one' in our family. I am not. I am impatient. I get angry (mostly at myself and my body's inability to do everything I want it to do), and I get depressed.

How do I cope with the depression? For one thing, I have been on Happy Pills for years...even before the MS. My husband likes me on my Happy Pills. He likes not finding me in a closet surrounded by pictures sobbing because I used to laugh till my stomach hurt. I'm not a huge fan of the Happy Pills, but they do keep most of the badness away. I don't laugh as much as I used to, but I don't cry uncontrollably as much either. What I do do is sleep. A lot. And I read. A lot. And I scrapbook and play in my art journal. A lot. The severity of the dizziness and depression/frustration/anger often determines how much of any of these activities I participate in. I like being active. I like keeping my brain active. I like multi-tasking and doing 1000 things at once. I mean, seriously, I was an ER doctor. ADD multi-tasking was my life.

Which brings me back to my earlier statement: 'God works in mysterious ways, but Satan works in not-so-mysterious ways.' Why am I talking about this now? Because yesterday was a Sunday, and Sundays and Wednesdays have become my most-frequent Bad Days. If I could predict when a Bad Day is coming, I would have to bet on it being a Sunday or Wednesday. Why these days? Because they are important to me. I am a Christian. I believe Jesus is the Christ, the Son of God, who died on a cross 2000 years ago and was raised from the dead to save the world from our sins. Sundays are Sabbath days. We spend our Sunday mornings (and sometimes afternoons and evenings) at church, worshiping and praising God and fellowshipping with our church family. Wednesdays are also church days. We are Southern Baptists. Baptists still have Wednesday night church. Wednesdays are less formal than Sundays, and more time is spent digging into the Word and teaching it to our children. Wednesdays are when my husband leads the 1st-6th grade boys in Bible Study. Wednesdays are when our 7th grade daughter gets to praise and worship with the teenagers in our church and when our 2nd grade daughter gets to learn about missionaries and spreading the Gospel here and around the world. Wednesdays are when I get to be a Pediatrician again. Wednesday nights have become an unofficial clinic night for me. Rarely does a week go by that I am not called to see a child or 2 in the nursery for a rash or a fever. Wednesdays are my time to serve.

So why do I have many of my Bad Days on Sundays and Wednesdays? Because Satan wants to keep me (and my family) away from church. He wants to disrupt our friendships and commitments. He wants to attack our family directly. He wants to separate us from God. Satan knows that we belong to Jesus, but he does not want us to witness or serve or in any way further God's work. He wants to destroy our family. He wants to stop the spread of the Gospel of Jesus Christ. And so he is obvious in his attacks. He knows of my physical ailments. Why not stimulate the symptoms and accomplish 2 things at once? I feel awful, and I cannot attend church and worship and serve. But I've learned. This pattern has intensified over the last 4 years. I've learned that if I can raise my head off the couch and get dressed and make it into the church building, then I will not regret it. God fights for me. Who am I to stand in His way?



For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.
- Ephesians 6:12 (NIV)

Finding Our Chosen Family

Do you have a Chosen Family? Do you know what a Chosen Family is? It's a term coined by my dear friend M to refer to our group of friends. According to M, your Real Family is the family you were born into. Your Chosen Family are the people God gives you to make up for your Real Family's faults. She says your Chosen Family includes the people you can truly count on. In this sense, I disagree. My Dad always taught me that the only people you can always count on are your Real Family members, and not your friends. He said friends would always let you down. I disagree with him, too. I believe that God has blessed us with a wonderful Real Family AND an amazing Chosen Family. I can count on them both, and I never knew that until I got sick.

2009 was not a good year for me. 2009 was when I was diagnosed with multiple sclerosis. When I walked out of my ER at the end of my shift at 7AM on December 26, I had no idea I would never practice medicine as an ER Pediatrician again. I fully expected to return to work 12 hours later to work another night shift. But God had other plans. I was admitted that day to a local hospital where I remained for a week. At discharge, I could barely walk with a walker around my house, much less drive or exercise. I don't remember much of the next 3 months. My mind has blissfully forgotten those months of lying on the couch unable to function...except for one significant day.

I will never forget it. I was lying on the couch doing my usual brand of multitasking - Internet, TV, and reading on my kindle - when some girls from our Sunday School class showed up at the door, girls I had only casually spoken to, but had never considered truly being friends with. M was with them. Their exact words, "Get dressed. We're going for toes (translation: pedicures), and you're coming with us." I tried to beg off, citing the constant dizziness that kept me from moving my head, much less my body. Their response, "Get dressed, or we're dragging you for toes in your jammies. You're going. You have no choice." I caved. It was easier then arguing.

I am so grateful that God sent those ladies to me that day. M and I talk and text multiple times a day, and it is a rare week that we are not trading off kids for some reason or another. She has become one of the best, most dependable friends I have ever had, and I thank God for her regularly. She and I are friends. Our husbands are friends. Our kids are friends. They're actually together so much, strangers think they're siblings from the way they act around each other. Our families are friends. They are our Chosen Family. And I am so very thankful.

Day to Day Change

Unfortunately for my family , this gluten-free lifestyle change affects them, too. We are a busy family. We homeschool. My husband works from home. We are always together - for better and for worse. To make sure our children do not become 'THOSE Homeschoolers' (you know the ones I mean - the cliché, grind your own grain, sew your own clothes, remove yourselves from society homeschoolers), we let them participate in several extracurricular activities. First and most importantly, we are active in our local church. Second, we are all active Girl Scouts (yes, even my husband). And third, we are active in sports, which I count as the Girls' PE. They average 1-2 hours of dance or softball 4-5 days per week.

This schedule does not allow for many home-cooked dinners around the table. We eat out a lot. Our main Family Meal is usually lunch, and dinner can be anything from a cup of cereal in the car to Moe's burritos or Chick-fil-a en route from ballet to Wednesday night services. It just depends on the day. All of this to say, not only has this gluten-free thing changed WHAT I can eat, it has also changed where and when we all eat.

So what are we doing? How are we handling this acute change? As best we can. I've given away most of my favorite baking mixes and go-to quick meals. I've stocked the pantry with just about every rice flour and potato flour and almond meal I can find, and I am slowly relearning how to cook. We are eating a lot more cereal for dinner, and my Girls are getting much better at fending for themselves. If I have a meeting or something else going on, my husband takes them to our favorite restaurants where I'm afraid I couldn't resist the yeasty goodness of the fresh baked bread. We are eating at home more. We are eating much later at night (you can still only do so much when everyone is gone from 4-7:30 every night). We are waiting for dance and ball to be over so that we can figure out a new schedule that works for all of us.

In the meantime, we are praying daily that this works and that my immune system decides to function and fight disease again. Because really? As much as I like bread, I like being not-sick and spending time with my family even more. Our God is a good God, and I truly believe He can do this for me. All I have to do is wait and hope. And if He decides to make me stay this way, I'll gripe and moan and complain for awhile, but then I'll suck it up and just deal.

Man Shall Not Live By Bread Alone...and Neither Shall I

After I saw the Heme/Onc (short for Hematology/Oncology) guy, I walked out the door not expecting to hear from him until my follow-up appointment in 6 months. It was lunchtime, and we were hungry, so my husband and I decided to grab a quick, yummy brunch of deliciousness at our local Waffle House. Their pecan waffles qualify for my select life list of very favorite foods. If I had known this would be my last time to ever have them, I probably would have ordered a dozen and eaten until I couldn't stand up any more.

Remember how I talked about Zebras and Interesting Patients the other day? Remember how I said you don't want to be one, but that I am one? Well...after I left my Heme/Onc appointment, my doctor spent some time researching what could be causing my immune system to shut down. He was unable to find a link between this and my MS, but he did find ONE STUDY being performed at BMS looking at a possible link between my particular immune problem and wheat allergies. Has this research been completed? No. Has this research been published in a reputable, peer-reviewed journal? No. IT'S STILL ONGOING, and there is no way to get me into the actual trial. So what does my hematologist decide? He wants me to try a wheat-free (aka gluten-free) diet. It will be our own, personal experiment. I literally felt Life As I Know It come crashing down around me.

I received this life-altering phone call around 4:30 on a Monday afternoon. I was not pleased. But God has a serious sense of humor. A very dear friend of mine has Celiac Disease, the only absolute medical indication for a gluten-free diet. Gluten-free can completely cure Celiac and eliminate its long term side effects. She has been gluten-free for several years and has been wanting me to experiment with the diet almost since the day she started it. Obviously, since bread is my very favorite food (I have literally lived on bread alone for months at a time while travelling overseas), I do not want to give it up. I like bread. Bread makes me happy. Anyhow, back to God's sense of humor...this friend was sitting next to me at my kitchen table when I got the call from my doctor. I instantly went into mourning. She became almost giddy with excitement.

After my initial shock and despair wore off, I went into my typical OCD, Type A mode. In the last 3 weeks and 4 days since I got this unpleasant news, I have read more books and cookbooks and websites and blogs on gluten-free cooking than I can count. I have dreamed about bread and pizza and fried chicken and yeast rolls and icing cake. I have fixated on finding acceptable substitutes for my favorite foods. So far, I have found a good pancake recipe, a decent oven-fried chicken recipe, and several awful bread recipes...complete with some flammable loaves. I'm a work in progress, and I know God has a plan for this. Right now, the risk of blindness and herniation and a nonexistent immune system are good motivators.

I'm a Zebra...Or...Lightening Struck More Than Twice

On top of everything else going on in the last week, my immune system is shutting down. I had my routine labs drawn at the end of January. One of the tests showed that my IgG4 is almost nonexistent. A repeat of the lab confirmed the results (In medicine, if we get a totally unexpected, weird lab result, we automatically repeat that lab. You never know when the wonky number is the result of a lab error. Better to be safe and recheck than to start chemo or other treatments when it was just a mistake in the lab. And just so you know, this is Good Medicine, not CYA Medicine.)

My PCP/neurologist at BMS set me up to see the local chief of Hematology/Oncology. He reviewed my history then gave me a look I've become way too familiar with over the years. He was confused. Perplexed. Intrigued. Now let me tell you...all the magazine articles and TV segments will tell you that you want a doctor that cares about you and that is interested in you. THAT IS NOT TRUE!!! They are wrong. Yes, having a caring, compassionate physician is a good thing. But you DO NOT want to be an Interesting Patient!!! Interesting Patients do not fit the mold. They are anomalies. They don't fit neatly into the puzzles we are mentally piecing together while we talk to you. They are the square pegs in the round holes. They get us excited to do research and look things up. They are not easy to diagnose and treat.

Interesting Patients are also called Zebras. There's a saying we are taught early in med school. It's actually one of my computer geek-husband's favorite factoids and quotes. No idea why. He just likes it. "When you hear hoofbeats, look for horses, not zebras" - the implication being that horses are common (like colds, ear infections, the flu), and zebras are not (like Ebola virus, West Nile, and rare, unnamed platelet aggregation disorders). When you find a Zebra, it is safe to assume that they will have only that one diagnosis. Zebras are rare. Multiple Zebras are extremely rare (ex. It would be extremely unusual and interesting to find a patient who had Ebola virus, West Nile, AND the rare platelet problem at the same time). Guess who is that Interesting Patient with Multiple Zebras? ME!!! It's so bad, my neurologist at BMS wore her zebra scarf this week at my appointment in my honor. It did make me laugh, because really? Only medical people would get the joke.

Anyhow, my immune system is shutting down. I have MS. And now I have pseudotumor cerebri. All unusual diagnoses that are not fun to live with or treat. Only the pseudotumor was easy to diagnose. The MS took 9 months from symptom onset to diagnosis, and I am considered a 'quick' diagnosis. We are still working on the immune system thing. I'll let you know more about that later. Until then, I have to get to the ballpark to see my Kid play center field. If you have any questions about this post or any others, I'll do my best to answer them from the Doctor or the Patient side, whichever is more appropriate.

CYA Medicine

As a follow up to my last post, I think I need to explain to y'all what CYA medicine is. Have you heard of it? Do you know what it means? At its core, CYA medicine means 'Cover Your A$$.' Don't do anything that will get yourself sued. Document everything. Make the patient look like the Bad Guy. Don't neglect good care. Be conscientious. Practice good medicine. Don't get caught missing anything.

Often this is as simple as ordering extra tests. Extra blood work. Extra labs. Extra xrays. Anything to make the patient happy. A good Patient Satisfaction Score has nothing to do with the quality of care they received. It has everything to do with their perception. And most patients believe that more tests equals better care. But we know better. We are just covering our butts. We want you happy so you don't sue us. And there lies the baseline problem with America's medical problem. We spend too much money just to keep the lawyers away. Just because you have a snotty nose and a cough, you do not necessarily need a blood test, a flu test, and a chest xray. The End.

Anyhow, how does this relate to my previous post, and why I am I addressing this now? Because that is what the local neurologists did. They were practicing CYA medicine. By not letting me back into the hallowed sanctum of a clinic room to be seen, they were not liable. If they had let me into a room, and if they had laid eyes on me, even accidentally, they would be responsible for whatever happened to me next (according to our wonderful litigious society). By having a nurse serving as a go-between, they officially never saw my face and therefore, have nothing to fear from a lawsuit. Instead, by insisting that I leave after having a chart made, they can write 4 magic letters on my chart: LWBS (Left Without Being Seen). This means, in the eyes of the court, that I came to the clinic, had a chart made, and for whatever reason I DECIDED ON MY OWN to leave.

Note the difference in reality. The reality: I was told to leave, and the doctors refused to see me in their clinic. The chart reality (or the CYA reality): I 'Left Without Being Seen.' A very subtle difference, but one that puts the fault on me if I had emergently gone blind or herniated. I guarantee you that the truth of that encounter was not documented anywhere but here. 'If you didn't write it down, it didn't happen.' Those are the exact words we are taught in med school and residency. Document everything...but only if you want it to show up in court. If it's not documented, it didn't happen. Scary, huh?

I Much Prefer Being the Doctor Than the Patient

So where was I? Oh yes. I had an appointment with Neuro ophthalmology for Friday morning. Obviously I went to that appointment, and I took my husband with me to be my ears and memory (Remember that part about forgetting things? One of the ways I cope is to make sure other people are with me for important moments so they can be my memory).

My Neuro ophthalmologist is a blunt man. He doesn't pad things just to spare my feelings or to make me feel better. His nurses ran their special tests and used their magic cameras to image my optic disks.  After reviewing the images, my doctor confirmed the papilledema (optic nerve swelling) and said it was worse than we had thought from just looking. He agreed that since I had normal MRI's in January, that I do, indeed, have pseudotumor cerebri. He then proceeded to tell me this isn't an emergency, and that I just needed to see neurology for an LP (lumbar puncture, aka spinal tap, aka tap) within the next week or so.

Now here is where I started to disagree. I am a pediatrician. And not only am I a pediatrician, but I am an ER pediatrician. I did a pediatric residency and an emergency medicine fellowship. In both pediatrics and emergency medicine, papilledema and pseudotumor are considered emergencies. Ear infections? Colds? Rashes? Not emergencies. Risk of blindness or herniation? Definitely emergencies. Emergencies, by definition, do not mean 'wait a week or so.' Emergencies mean 'act NOW.'

So what did I do? I told my doctor that if he didn't know a neurologist who would tap me that day, then I would be leaving his office to go to the ER to get an LP that way. Did I want a spinal tap? No. Who wants a needle stuck into their spine? Did I need a spinal tap? Yes. LP's both diagnose and treat pseudotumor. The sooner they are done, the sooner CSF (cerebral spinal fluid) can be removed to relieve the intracranial pressure.

What did he do? He acknowledged my concerns and stubbornness and said he would make some phone calls. He returned a few minutes later with instructions to go directly to our local neurology clinic.

Now let me preface the rest of this story by telling you that neurology in my town stinks. I live in a city in America. I am in the developed world. Land of the Free and Home of the Brave. We have good medical care here. Except for neurology in my town. It's awful. When I was first diagnosed with MS, a neurologist here told me I had had a stroke. Now I know myself, and I had reviewed my own CTs and MRIs. I had NOT had a stroke. I had no risk factors, and I had zero signs or symptoms. What's the difference between a sign and a symptom you ask? A symptom is a subjective feeling that you tell your doctor that cannot be quantified (ex. runny nose, cough, sore throat). A sign is an objective finding that your doctor is able to see and observe (ex. a red throat with post-nasal drip, your heart rate, or your blood pressure). There was no way I had had a stroke. This is just my personal experience with our local neurology departments, but consistently, patients and doctors here agree: If you really need a GOOD neurologist, you need to go to the BMS (Best Medical School - aka the mega university hospital as referenced in the medical school classic novel House of God and immortalized forever on the TV show Scrubs) that is 4 hours away.

Continuing on...My husband drove me directly to the clinic. I had been told to 'come now' for a clinic visit and lab work, and then my LP would be done at 2:00. I arrived in the clinic and checked in. I filled out the paperwork. I turned in my driver's license and insurance information. I had a chart made. And I waited in the waiting room to be called back to see the neurologist. After about 15 minutes a nurse came out and asked if she could speak to me. Thinking she was wanting to do some triage and get some preliminary information, I agreed. She then (very nicely) proceeded to tell me that the neurologist and his partners all refused to see me as a patient. Someone, many years ago, had mistakenly written in my chart that I have von Willebrand's Disease - a platelet disease that keeps your body from properly forming clots. This would be a reason to not do an LP in a clinic setting. It would require being in the controlled setting of the hospital where blood products are available in case of uncontrollable bleeding - a relatively simple thing to do, just something that requires a little preplanning and preparation - which would be fine if I had the disease at all. I DO NOT HAVE VON WILLEBRAND'S DISEASE! I explained that this was an error in my history, and she said she would tell the doctors. Less than 5 minutes later she returned. She again told me that the doctors (yes, there were multiple neurologists involved by now refusing to see me) were not going to see me that day or any other day for an LP. To give her credit, I could tell she was not enjoying being the proverbial messenger and that she was doing her best to be nice. To quote the rest of the conversation:

Me: May I please speak directly with the neurologists and explain this error. I do not have von Willebrand's Disease.
Nurse: I'm sorry. I cannot take you back there. They are busy.
Me: Where are they? Are they here?
Nurse: They are busy seeing patients in clinic.
Me: Ummm. I am a patient, and I am standing in their clinic.
Nurse: I'm so sorry.
Me: Do they know that I'm a doctor and that I actually know what I'm talking about?
Nurse: Yes. They are fully aware that you are a Pediatric ER doctor. They still say they will not see you.
Me: So correct me if I'm wrong here. I'm a physician, standing in their clinic to be seen as a patient, and they refuse to even look me in the face to tell me they won't see me.
Nurse: That is correct.
Me: Then you can let them know that I will never refer another patient to this clinic and that I will let everyone I know what has happened today.
Nurse: I understand.

And there we have it. My fun fun Friday morning. I walked out of that clinic angrier and more scared and frustrated than I have been in years. I called my own personal neurologist at the BMS in tears and told her what was going on. She, appropriately, expressed her appalled feelings that this had happened and said she would take care of it. She called me back 15 minutes later to tell me to go to my local small, community hospital. Radiology there would do my spinal tap that afternoon. I did as instructed, and surprise surprise, I didn't have any bleeding problems and the LP was performed without complications, both confirming and treating my diagnosis of pseudotumor cerebri. Thank You, Jesus, for my neurologist and for that hospital.

If It's Not One Thing It's Another

I have MS. That is an established fact. I get dizzy. I see double. I fall down. I stumble over words. I forget things. It all comes and goes, but such is my normal. I have Good Days, and I have Bad Days. This is my reality. I've sort of gotten used to it. I don't like it, but it's my life.  At least it was until Thursday.

I went in for my routine eye exam for new glasses. My optometrist, who happens to be a close friend and who happens to be the person who first diagnosed my MS, got 'that look' on her face. You know the look your doctor gets right before the Poker Face kicks in? I know it well. I've mastered it. I'm a pediatrician. I've hidden 'that look.' I saw it immediately. I knew there was something wrong. I was right. There was.

I have bilateral papilledema, otherwise known as swelling of the optic nerve. This is NOT a good thing. As a doctor, the first thing I think when I see papilledema in a patient is 'tumor.' Now before you panic, I don't have a brain tumor...or at least I didn't on my last scans 3 months ago. Anyhow, number 2 on the differential is pseudotumor cerebri or some other cause of elevated intracranial pressure. Risks include blindness and cerebral herniation (when the brain stem comes out through the hole at the base of the skull). In medical school they teach us mnemonics to help us remember diseases and factoids. The mnemonic for pseudotumor cerebri is 'Fat, Fertile, Forty, Female.' Guess what? I'm all four. I'm fat. I'll be 40 in three weeks. I'm not menopausal, and I'm female, putting pseudotumor very high on the list of possibilities.

At this point, my optometrist friend called our town's neighborhood-friendly Neuro ophthalmologist to arrange an appointment for Friday morning. In the meantime, I got to go home and try not to stress over the possibility of going blind. Believe me when I tell you I did everything I could to stay busy and distracted until bedtime, at which time my already-constant prayers kicked into high gear. I truly believe our God is a God of miracles, and right now, I would really appreciate my own personal miracle.

Waiting for God

I have been asking God what He wants me to do with my life for over 3 years now - and when I say daily, I really mean DAILY. All the time. Begging. Pleading. Wondering. Questioning. Sometimes He tells me to "Do This Now" or "Do That Now," but until recently, I had to keep questioning and wondering the BIG "What Do YOU Want Me to Do with My Life?" Now I am starting to wonder if He is beginning to reveal His answer to me.

I am a Pediatrician. All my life, God has called me to work with children - with His Babies. In high school and college, I skipped the whole waiting tables/fast food/serving thing most of my peers excelled at. Instead? I babysat. I worked at the Birmingham YMCA after-school day care and summer day camps. I lived and worked with kids. I loved it. I loved them. I loved showing them that someone loved them and wanted them around. And so when it came time to choose a Life Calling, I became a Pediatrician - but not just any Pediatrician- and Emergency Room Pediatrician. Because not only did I love children, I also love(d) Instant Gratification. I'm an adrenaline junkie. I am a multitasker. I can't sit still and only do 1 thing at a time. Watching TV at night? I will also be reading blogs or a book, talking to my husband, folding laundry, and anything else my hands and body NEED to be doing at that same time. I'm a wee bit nuts. It drives my husband nuts, but in his own (very recent) words, "I'm HIS Crazy." He loves me anyway.

So what does this have to do with anything? Three years ago I was diagnosed with Multiple Sclerosis. In an instant, I had to relearn how to live. Being a Pediatric ER Doc? Gone. Multitasking 10 things at once? Gone. Staying up and working nights and weekends? Gone. Saving lives one earache at a time? All gone. Instead, I lost 2-3 months of my life. I existed. I relearned how to walk without a walker. I learned how to concentrate with a near-constant FOG in my brain. I relearned how to use the microwave (yes, there are times when I forget how to turn on our basic appliances). I learned what it meant to be The Patient, and not The Doctor. And through all this, I questioned. I asked. I begged. Why God? Why Me? Why push me and let me go through all that (often-miserable) training to have my dreams taken away from me? Why teach me how to save babies and then not let me save them? WHY?!!!

And through all this, He's been teaching me. Teaching me patience (I HATE patience). Teaching me to rely on others. Teaching me to (gasp, gasp, gasp) not only accept help, but to (gasp, choke, gag) ASK for help. Teaching me that I can't DO everything. Teaching me to be still. Teaching me to accept limitations. Teaching me to Trust Him and HIS Plan. But I still just want to know. I want to know WHY? I want to know WHAT NOW? I want to know WHAT NEXT?

The last few weeks have been rough. I've had another MS Flare and have been back on massive, high-dose steroids. I have had another three weeks of just existing and sitting on the couch. I have not been able to take care of my family. I have barely been able to take care of myself. Showering daily has become a GOAL, not an ASSUMED part of my day. I have read a lot. I have slept a lot. I have watched a lot of TV. And I have created a lot of art.

I am a scrapbooker. I am a photographer. I take pictures of everyday life and document my family's stories for us to remember later - and to help me remember. Another side effect of my MS is poor short term memory and difficulty forming new memories. I, literally, forget entire conversations and days. It's as though they never happened. Scrapbooking helps me with this. By looking at my pictures and reading what I have written, I can remember. By looking at them with my children, I can hear what THEY remember. I can hear their perspectives on our family's life. I can hear how they perceive this marvelous life of ours. I can process and question Why God has given me this disease.

During this Flare, I haven't been able to scrapbook as much. My mind and hands have not been able to coordinate well enough to play with pictures, words, and pretty papers. But I have felt this NEED to create - a need to express on paper how I'm feeling and the thoughts that keep swirling through my mind. God has reminded me of hymns and verses I learned as a small child. He has put them in my heart and in my mind to remind me of His Love. He has 'lead me beside the still waters for His Name's sake.' He has prompted a need in my heart to create. To create art with the words He has been whispering in my heart. To make a visual reminder of this season of my life. To document His Love for Me.

I don't know what comes next. I don't know what He wants me to do with my life. I don't know what He wants me to do with my love of children and Pediatrics. But I do know that He has a plan. I know that He is in control. I know that He wants me to play with pictures and pretty papers. I know that He wanted me to write this blog post and many many more about this journey He is leading me on. So bear with me, World. There's no telling what's coming next.