Jefferson Adventure: Day 1-2

Sunday morning, July 23rd, dad and I got up and ready to head to the airport. I got my Sophie dog packed up, my Glitter cat kissed and assured of my love, my living room as empty as possible for the flooring to be replaced while gone, and made a stop at the Sycamore Dog Estate before meeting up with dad and stowing my car. Our drive was grey and rainy but uneventful.

Thankfully the rain and lightning cleared before our first flight and pretty soon we were in Atlanta. After some airport lunch we boarded once again and touched down in Philadelphia at about 4:30. We found my bag at baggage claim and called the hotel to request the shuttle. We made it to the hotel where the man at the check in desk was rather confused about the separate reservations under the same last name (one for dad and me and one for mom when she joins me.) but we got it all figured out.

I was disappointed to learn that there was not complimentary wifi except in the public areas but we have been blessed with 4G on our cell phones so our grub hub order could still be placed. I know, first world problems are tough. Getting our dinner was a bit of a circus but we didn’t go to bed hungry so all was well in the end.

This morning, Monday, I called to confirm my 1 pm appointment and we caught an Uber to the city around 11 am. We walked around and found an ihop where I got breakfast and dad got lunch, and we met the slowest waitress I’ve ever seen in my life. Thankfully I had allowed us plenty of time so there wasn’t much worry about being late to check in for the appointment.

After sitting in the waiting room for about forty minutes I finally made it back to talk with my doctor. She was trying everything she could to get my insurance to approve my admission so that we could go ahead with the lidocaine infusion as planned but so far hadn’t been successful. After lengthy discussion of our options, we settled on a plan for me to come back at 7:30 tomorrow morning for outpatient infusions and pray that insurance calls back with good news. My vitals weren’t good enough for her to feel comfortable administering the medication she would have preferred without me being inpatient, but we will try some abortive IV medication to hopefully at least provide temporary relief while waiting out the insurance call. She was also rather appalled that no other doctor has talked to me about POTS (Postural Orthostatic Tachycardia Syndrome) before now because my symptoms point that direction and – SURPRISE – I have responded to the medication she gave me to control said symptoms. It’ s a form of autonomic dysfunction that is seen very commonly with NDPH. This means my body can’t regulate things like heart rate, blood pressure, and temperature the way it should.

We discussed my increased joint pain and issues with insomnia and she thinks that the joint pain spike could be a full body response to the recent Botox treatment I had and that the lidocaine infusion could be helpful for that. The idea of that infusion is to calm my central nervous system which is overly sensitized. However, that particular treatment comes with enough cardiac risk that in order to do it, I will need to be on a monitor 24/7, which is not something that can be done in an outpatient setting.

Tomorrow dad will fly back home and the plan for me to be at the hospital is very up in the air right now so I made myself further hotel reservations so that we can continue with the outpatient treatment. Mom is still planning on driving down to join me on Thursday and depending on insurance decisions will drive back home together at some point.

We’re all praying that things go our way and that I can have this infusion that I’ve been so hoping for for the past two months but keeping in mind that there is a plan in motion bigger than my own. I will be incredibly disappointed if the denial isn’t overturned but I’ve been keeping in mind Philippians 4:6-7 that says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” Its really difficult to accept when what looks best to us is not what God has in mind for us, but thankfully, he is much better at directing my life than I am and so I will just do my best to trust that if the answer is “no”, its because something else, even better than what I can imagine, is in store.


The Issue I Have With Demanding Explanation From God

I’m sure we’ve all thought it. Maybe even begged for it. Everyone wants clarity in their lives and to have their questions answered, especially when their questions involve pain. Whether the pain is emotional, physical, or spiritual, we all crave the knowledge that suffering is not in vain. This often manifests in asking God for an explanation or “sign”, and here’s why I believe that is setting yourself up for disappointment.

Starting at the ground floor of my thoughts is this simple fact: God is God and we are not. What I mean by that is that God is omnipotent. He knows everything that ever has happened, what is happening, and what is yet to come. He has created the entire universe and doesn’t abide by the limitations we have as humans. In contrast, we can see the tiny speck that is our personal experience. We couldn’t possibly understand the complexities of the Almighty God.

The first of two of my favorite lines in the movie, The Shack, is when “Papa” is telling the main character that he can only see through the knothole of his pain. This means that we are only able to see part of the whole picture. There are things going on that we are completely unaware of and its not in our power to know them.

The other line I found to be worth repeating happens again in a conversation between the main character and the “God” character. It goes, “Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies”. So often we blame God for our pain and ask why He is creating this struggle in our lives instead of asking how we can grow from it or how good can come from our trial. Understanding that while, yes, God does have the power to make the world perfect and painless, we live a life with free will. As long as we are able to make our own choices, there will be suffering in our lives. God is interested in relationship, not robots. Because of that fact He chooses to let us decide for ourselves if we will allow his love and perfect plan shape our lives.

Beyond the basic understanding that God uses our pain but does not create it,  asking for a sign sets us up for disappointment and frustration because we don’t know what we’re asking for in the first place. What exactly would a “sign” look like to you? Would you expect a divine voice to audibly speak to you? Maybe a dream that explains everything you’ve been questioning? What about the signs from God that surround us each and every day?

We live on a swirling ball of molten rock covered in water and dirt that orbits a star at just the right distance and tilt to allow us to exist. Just ponder that for a moment. It was once said that “for those who believe, no proof is necessary. For those who do not believe, no proof is possible”. At what point would we notice that God was speaking to us? His voice is so often left unheard simply because we are not paying attention. His timing is written off as coincidence or just the universe randomly playing out. It is all too easy to spend all of our time asking questions and never listen for the answers.

One figure told about in the Bible that I relate quite well with is Job. If you grew up in the church or have learned about many of the stories told, you are probably familiar with his life. We know that he lost everything due to Satan attempting to assert power over God and prove that Job only worshiped him because he was so blessed with worldly things. First he lost all of his belongings after being a very wealthy man. Then he lost his entire family. Finally his health was taken from him and he suffered greatly. Those who once respected him looked at him with disgust and his closest friends accused him of harboring secret sins that he was being punished for. We know that through all of it he held tight to his faith. What we often don’t think about is that Job didn’t know what we know as the audience all these years later. He wasn’t privy to the conversation and spiritual warfare between Heaven and Hell. And he never got an explanation. 

Job never learned the reason behind his troubles but that is not to say God was silent. Toward the end of the book God speaks to Job out of a storm and asks him why he believes he knows better than the creator of everything. Despite begging for the chance to plead his case to God, Job humbles himself and finally acknowledges that he was talking about what he did not understand. Job did indeed ask for forgiveness of his sins, but they were not the sins his friends had accused him of. Rather, he repented for his attitude and for questioning the sovereignty of the Lord.

Demanding an explanation from God is not going to get us anywhere except straight into self righteousness, anger, and disappointment.  His timeline is not the same as ours and we are asked to trust, even when we do not understand. We may never know the “why” behind the struggles of life but we can rest in the fact that God is in control.

God is in control. 

God is in control. Of everything. 


Getting Real Freakin’ Honest Y’all

These past few weeks have been really, really hard. The day after I got back from Philadelphia I went out to take Sophie dog for a walk and promptly ran my foot into some uneven sidewalk and demolished the outside of my right foot. It wasn’t a serious injury really – I figured I’d lose a toenail and it would be swollen and sore for a few days but I’ve broken toes before and gotten over it just fine. No need to whine around.

Welllll my already hypersensitive nervous system had some other plans and I still haven’t been able to put my foot in water, under a blanket, put weight on the outside of that foot, or deal with temperature changes without pain. Basically I’ve developed intense allodynia on the outside of my right foot.

And its embarrassing. I’m actually really embarrassed that my stupid, broken down body can’t even deal with a simple toe injury without dramatics. I’m ashamed that walking down the refrigerated aisle of the grocery store causes me to be awake half of the night with burning pain that is completely uncalled for. I don’t want to talk about it because it’s just another Ashley Issue that doesn’t show up on any scan or blood test. Just another thing that makes me look like a whiny, wimpy, baby who can’t handle life. Just another issue that makes me look like a drug seeker in the eyes of the medical world.

If you’re sick of hearing about my life that, at the moment, is completely controlled by pain issues, I GUARANTEE you that I am 100 times more sick of living it. I hate the fact that every social media post I write has something to do with medical issues because that’s all I have to talk about anymore. I hate this so much more than any of you. I hate that the person I used to be has all but vanished and I don’t know who I am anymore.

I’m trapped in this body which means that no, I can’t go to that concert or go camping or be the fun person I used to be right now. But please don’t leave me. Please don’t forget about me. Please keep talking to me because I’m still here and I need the people in my life now more than ever. I know I’m a downer and my conversation is boring and I have the focus and concentration of a goldfish. I know my contribution to my friendships has become pretty minimal and I live like a lame hermit, but please remember that I’m here.

I’m sorry that my life has turned into this nightmare that isn’t pleasant for anyone. No one likes to talk about illness. No one likes to hear about medical procedures and pain. Its considered a negative topic and those whose lives are dictated by it are generally considered to be obsessive and in need of mental stability. But let me tell you, from the inside of this awful, inescapable, living horror show, it is so much more miserable than you can imagine. I don’t want to wake up and live this any more than you want to hear about it. I want to be better so much more than you want me to be better. What you feel for the thirty seconds it takes you to glance at my Instagram post, I feel 24/7.

So I’m just going to be honest. Life is hard right now. I feel more alone right now than I ever have before. Yes, my life is ruled by pain at the moment and I’m not going to be ashamed of that. I’m not weak. I’m really, really freaking strong. I live this hell every day and every day I wake up and fight some more. So if you can’t handle that, then that’s ok – but if you want to be a part of my life, I could really use some friends right now.



Is It Safe to Follow Jesus?

A couple weeks ago I was sitting in church listening to my pastor deliver a sermon focused on the passage in Matthew where Jesus is asleep on a boat when a monstrous storm cropped up threatening to overtake the boat and drown the passengers. His disciples woke him and Jesus calmed the storm leaving the disciples in awe and terrified. After all, the man had just commanded nature and nature obeyed! I think I would be pretty terrified of someone that powerful too!

Toward the end of the sermon, the pastor quoted a line from The Chronicles of Narnia in which one of the children asked if Aslan (the lion portrayed as the Jesus character) was safe. The beaver replied by saying, “Safe? Of course he isn’t safe, but he’s good”. Thinking of Jesus being portrayed as a lion reminded me of an experience I had on a road trip with my sister a few years ago. We were camping in Yellowstone National Park and one day while driving to the next attraction, a black bear sauntered out onto the road in front of us. We stopped a safe distance away and excitedly whipped out cameras and took pictures of this wild animal so close to us that we never expected to see in person. It was a really neat moment and I remember thinking how cool it was, but I wasn’t afraid. When we got to the trail we were planning to hike, I began thinking about that bear and felt much more vulnerable without the safety of a car around me. I knew encountering a bear in this setting would be a much different feeling and far more dangerous. This was not a situation I was in control of and the fear crawled up my spine.
How often do we do that same thing with God in our lives? We generally like to talk about him being loving and just but sometimes forget just how powerful he is! God was very forthcoming in saying that in this world we will have trouble, but that He has overcome the world (John 16:33). Choosing to really follow Jesus and give Him control over our whole lives is not the safe choice, but oh is it good. He works all things for the good of those who love him (Romans 8:28), but it is not going to be comfortable. Letting go of our perceived control over our lives and allowing Jesus to flow through every aspect of ourselves can be really scary, as though we are removed the proverbial car between us and the bear, but he is trustworthy. However, I think it is important to understand that our idea of what is good for us doesn’t always line up with his. Paul was stoned, imprisoned, and martyred for his faith. In fact, John is the only one of the twelve apostles thought to have died of natural causes.
Choosing to follow Jesus can mean having your whole life flipped around and accepting that while you might not understand, you believe that His plans for you are good. It can mean having your dreams reshaped and molded into something you had never pictured for yourself. It can mean that you may have to deal with some really difficult things in life but hold unswervingly to hope, because the one you follow is faithful (Hebrews 10:23).
Accepting Jesus also means that the power of the one who controls the wind and waves lives inside you. That you are a part of the family of God and therefore are co-heirs with Christ and in sharing his sufferings, we will also share his glory (Romans 8:17). It means that you no longer have to feel that everything is on your shoulders because there is someone more powerful than Satan himself who has wonderful plans for you and what he started, he will finish (Phil 1:6). Accepting the perfect love of Jesus means that there is nothing left to fear (1 John 4:18). He has overcome death, he has overcome the world, and he loves you! If we can trust in his promises, we can say that of course He isn’t safe, but oh is he good.
Medical · Uncategorized

My First Appointment at the Jefferson Headache Center

I’ve decided I want to keep better documentation of my experiences these days. I’ve let myself completely stop documenting this period of my life because I’ve been thinking of it as more of a transition or waiting phase rather than my life that I’m actively participating in. Now I think that this is just life and be it the medical saga that it is, its mine and its up to me to not only survive it, but to embrace it and make the most of what I can! With that being said, I’m going to be documenting my medical journey more often on this blog as well as writing down my thoughts and opinions on other topics! So here goes… my first appointment at the Jefferson Headache Center…
Mom and I packed up to hit the road on Tuesday, May 23rd which also happens to be moms birthday. We weren’t able to do much celebrating because of the circumstances but she has never complained about the sacrifices she makes for my sake (well any of her children really). I think she deserves all the thanks in the world but that’s another subject altogether. We dropped my Sophie dog off at the Sycamore Dog Estate where she loves getting to spend time with her canine friends and running around to her little hearts content. Then it was me, mom, and Moxie eastbound and down with the goal of making it to the hotel room in time for the Dancing With the Stars finale that night. Moxie was an excellent traveling pup and provided plenty of smiles and “awww” moments along the way. We made it to the hotel just in time but the room kind of reminded me of something out of a horror movie… we had two nights reserved but packed our things in the morning and decided we’d find somewhere else for the next slumber.
Moms phone guided us to the right address fairly easily and once we parked and checked in I started working on the personality test all new patients take. I do think its complete garbage that the psych doctors choose not to work with insurance at all so it was nearly $500 out of pocket right off the bat for this test and a consult with the psychiatrist – both of which are required for all new patients. Anyway, we thanked God for the blessing of the ability to pay for it and moved on and hopefully insurance will reimburse the fee. While working on the personality test the nurse called me back to the exam room to take my vitals. Things were ok aside from having rather low blood pressure and of course still being underweight. She took a somewhat brief history and then sent me back out to continue filling in bubbles.
A little while later the psychiatrist called my name for my consult with him. He was super nice and very knowledgeable. He immediately put to rest any worries that they may be trying to “weed out” patients that are “attention seeking” or “just depressed” or anything of the sort and explained that rather, they want to treat the whole person and an important part of that is mental health as well as physical. I was very happy that he listened to what I said and despite my history with depression, he agreed that right now, any depression or anxiety is a normal response to chronic pain that is caused by the physical problems and not the other way around. He also had some interesting thoughts about the cycles of insomnia I’ve been having. Overall I was really put at ease with our conversation.
After finally finishing the 330+ question personality test, I met with my doctor who will be the head of my team. She is primarily a physiatrist with a fellowship in headache medicine, trained in both pediatric and adult medicine, rather than a neurologist. I love this because not only can she evaluate my body as a whole, she takes several different approaches including physical medicine, medication therapy, and holistic options! We had a long conversation and she went all the way back to mom’s pregnancy with me. She explained that what is happening in my body is all under the umbrella of a hyperactive central nervous system. There are lots of different names to give the different collections of symptoms I have but at the end of the day, her goal is to “reset” my CNS and the parts of my brain that have been telling me that my dog’s cold nose on my leg is painful and things of that sort.
We decided that the most efficient use of our time would be to do inpatient lidocaine infusions and I am scheduled to go back for a follow up July 24th to discuss expectations and make a plan, and then I will be admitted July 25th to the inpatient unit for the infusion. It will likely be a 5-7 day admission and after that we will discuss options like physical therapy for my neck and shoulder pain, continuing biofeedback, and what medication regimen I’ll be using.  During the appointment she also gave me a prescription for a medication to address my POTS-like symptoms. Although I don’t meet the criteria for an official POTS diagnosis, she did want to address the fact that my body certainly leans that way and it is often a comorbid condition of NDPH. We discussed my Botox treatment at length and decided that if my Botox specialist in Indy is not willing to do anymore treatments after the second round, I will most likely transfer that care to her as well. That would mean a trip to Philadelphia every 84ish days which is certainly not ideal but, as mom and I decided, would be worth it if I were able to have a better quality of life. We’re just leaving that situation in God’s hands to work out!
After the appointment was over, mom and I headed back to the car and hit the road back west! We made it to somewhere in Ohio where we got a room for the night that was significantly more appealing than the previous night’s lodging and let Moxie romp around all over and had some good laughs watching her pounce on each of her toys. We stopped at a massive candle shop somewhere around New Castle, IN on Thursday that happened to be pet friendly so Moxie had a ball walking around shopping for a bit and we enjoyed some time out of the car. Little fluff ball got loads of attention thanks to her being SO gosh darn CUTE! On Thursday afternoon we pulled into moms driveway safe and sound and I picked up a very happy Sophie dog after a short rest on the couch. It was a whirlwind trip that has left me totally and completely drained but it was a worthwhile one! Now my goal is to make it through these next couple of months as best as I can and pray that the admission in July is successful! We are very thankful to God for safe travels, good insurance, sweet puppies, moms affinity for driving, and of course a positive outcome of this appointment!


Its a funny thing, approval. Its not quantifiable, its not equal, and its completely subjective. Yet it is the very thing most of us spend our lives chasing. One of the most influential factors in the weight of approval is who or where it comes from. Being told by your mother that you’re beautiful is great but being told by the guy you’ve had a crush on for years that you’re beautiful? That usually carries more weight in our minds. Hearing that you’re intelligent from your best friend is one thing but gaining entry to the university you’ve been dreaming of feels more validating. Its so easy to tell ourselves that those closest to us give us compliments out of a sense of obligation or because their loves clouds the “true” picture of you. The quest for approval is one that never ends and while it can be a healthy motivator to achieve your life goals, it can just as easily be a tool for your destruction.

There have been so many times in my life when I have sought approval from unworthy places. I thought that if I could do well enough in the sports I was involved in, I would get the thumbs up from not only coaches but my teammates as well. I went through a phase of rebellion when I sought the approval of the “party crowd” which only led me down a path of self-destruction and broken trust between my parents and I. I have placed my self worth in my grades and found that it didn’t matter if I had a 4.0 or a 2.8 GPA, I would never feel fulfilled by my transcripts. Approval from professors was not enough to satisfy my heart.
When I took a step back and really thought about it, my mind wandered to the question, “whose approval is most important in my life?”. What if there was a standard to measure myself against? A perfect person who could tell me if I’m really all the things my family and friends say I am. Am I really beautiful? Am I really worthy of love? Or are those just things people say?
As it turns out, there is in fact that perfect person. He walked the earth over 2,000 years ago but his words and teachings are still shaping the world to this day. His name is Jesus. In his time as a man among us, he was the perfect example of how we should live. If there is anyone whose approval carries the most weight, shouldn’t it be from the only person to live life with no sin, no mistakes, and with perfect, earth-shaking love? Some attributes of this man were (and still are) love, mercy, righteousness, kindness, compassion, self-control, fairness, and honesty. He did not live to please people but rather to please God. He had those in his life that hated him. Being perfect does not always equal never having conflict or never offending anyone. He lived by the standard God set out for us and not the standards that come with something as empty as sports, grades, or friend groups.
So what does this man think about me? Well, for starters, he knew me before I was born. Before I was even a thought in my parents mind, he knew the plan for me and he created me just the way he intended (Psalm 139:13-14). He loves me enough to call me by name (Isaiah 43:1). He has chosen me to be part of his family (1 Peter 2:4)! Just think about that for a minute. The most perfect man who created the universe wants me to be his child. The one who put every star in the sky and every drop of water in the ocean, cares to know me. Even though I am a mess of a human, he loves me just the same. He also cares about what is happening in my life and wants to take my anxieties and worries into his hands (1 Peter 5:7, Phil. 4:6-7). He makes everything work for my good, even when I can’t see it. Even when things are painful and I can’t imagine how the suffering could possibly be anything but mindless, pointless pain, he tells me not to worry because it is in his hands (Romans 8:28).
Finally, perhaps the most mind bending part of this perfect man, he died for me so that I wouldn’t have to. He didn’t just die but took on the worst of the worst punishments. The man who had no sin was willingly beaten and whipped and nailed to a cross so that I could live and spend eternity with him. (John 3:16-17) So with this knowledge, the approval from any worldly places seems to pale in comparison. There is no one higher than Jesus and he loves me. He says I am worthy, I am called, I am his child, and I am loved. His approval is all I need.

Intro to Ashley 101

Hi all! This is my first attempt to join the world of blogging and I’m excited to see where it leads! My name is Ashley, I’m 23 and I spend a lot of time with my own thoughts. More than four years ago I woke up to a one-sided headache that has never gone away. I live with a condition called New Daily Persistent Headache and it has impacted my life in ways I never thought possible.

I’ll back up a little and tell you the more interesting things about me first. I was born and raised in rural Indiana with my older brother and sister. After high school graduation I moved to Texas to attend Texas A&M University. I found my calling in Animal Science but unfortunately was not able to complete my degree, though I still love to learn and educate about agriculture.

About two years ago I made the move back to Indiana and now live with my two pets, Sophie, the cattle dog mix and Glitter, the unruly cat. They definitely keep things interesting! I worked at our local humane shelter when I first moved back to the midwest but eventually my health deteriorated enough that I was unable to keep that job. I spend a lot of time now with myself either in bed or on the couch which has resulted in some interesting thoughts I mull over on a daily basis. I write for The Mighty, an online community of chronic illness sufferers which is how I learned that getting my thoughts written down is very therapeutic for me. Because The Mighty is all about chronic illnesses, not all of my writing is relevant to that site which is why I decided to give blogging for myself a shot!

It is my hope that my words encourage others and are beneficial to those who read them. Thank you to those who know me personally for taking the time to encourage me to write and thank you to those I’ve yet to meet for giving me a reason to.