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Peace

It seems these days that peace is hard to come by. As defined, peace is the absence of disturbance and, when you look around the world today, there aren’t a lot of examples of that. We can all see lack of peace in things like wars and natural disasters, but in our personal lives we also have a lot of things pulling at our hearts. So what in your life brings you peace? I think most people would answer financial stability, good health, or thriving relationships. So what happens when those things are taken away?

We like to think that we can be confident in our worldly comforts but the reality is that all of those things can be lost in an instant. For me, I lost my health first. That was followed by losing my opportunity for a college education. I lost my independence. Financial security went out the window when I lost the ability to work. So where did that leave me? In one word, floundering. All of the things my identity was seeded in were gone and peace was replaced by anger and frustration along with their good buddy, worry. However, after many attempts to find peace in other worldly outlets that ended in failure, I turned to God and sought peace in his promises.

John 14:27 says, “Peace I leave with you, my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid”. I found that the kind of peace I have received from reading scripture and becoming more rooted in faith is very different from peace derived from material things. The most striking difference is that this peace is not dependent on circumstances. I haven’t suddenly become healthy again but I no longer have to sit in worry and fear of the future. I know that whatever happens in my life is part of a plan that is for my good and God’s glory.

2 Corinthians is a letter written by the apostle Paul to the church in Corinth. We know that Paul dealt with a chronic and debilitating “thorn” in the flesh. We don’t know exactly what caused his distress but I think that makes him even more easy to relate to. Physical difficulties are often the source of many pleas to God and many times he chooses to not heal the afflicted but rather use the experience for a greater purpose, as he did with Paul.

In 2 Corinthians 12:8-10 Paul says, “Three time I pleaded with the Lord to take it [thorn] away from me but he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness’. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong”.

While Paul had to accept his proverbial thorn, he did not complain about it or rage against it but rather he allowed the Lord to shine through it and set an example of confidence and trust. In chapter 4 of his letter he told the church, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary struggles are achieving for us an eternal glory that far outweighs them all”. That’s a pretty powerful statement! No matter how many times Paul was beaten, imprisoned, insulted, or even stoned and left for dead, he had the world in checkmate.

He exemplifies this in his letter to the Philippian church which was written while he was imprisoned. In Philippians 1:21 Paul says, “For me, to live is Christ and to die is gain”. By this he means that if he continues living, he would be continuing to share the gospel and, if he were to die, he would be in the presence of God for the rest of eternity. It didn’t matter what the world did to him because his peace didn’t come from the world. It was a peace that could never be taken away from him.

Having peace from the Lord is the only peace that lasts. Our circumstances can change in an instant. Jobs can be lost. Houses can be washed away in a storm. Relationships with people can whither and die. You could wake up sick one day and never get better. But amidst these trials we can rest easy in knowing that there is an Almighty God who is more powerful than any of it and he has promised us an eternity so perfect that it makes our current struggles not even worth comparing. I don’t know if my personal thorn will be taken from me or not but I will chose to allow God’s power to be made perfect in my weakness.

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Fighting Lyme: Step 1

Earlier today I had my first appointment with the doctor that will hopefully be able to lead me down the road to remission! When mom and I got to the building, I was already much more encouraged than I had been walking in to see the previous Lyme doctor who diagnosed me. In the front cover of the book mom picked up to flip through in the waiting room was a note from a previous patient’s mother thanking this doctor for all of the help she had given to her daughter.

Confidence continued to grow when we walked back to the exam room and I saw how thoroughly my doctor had been when she went through my 4 inch binder full of medical records. She was excellent when going through my history with me and really listening and acknowledging each symptom I have experienced. Determining what treatments I was comfortable with was very much a conversation between the three of us rather than simply being given a prescription to manage symptoms and then ushered out of the office – a huge change from previous experiences!

We determined from my medical records and symptoms that Babesia is most likely my biggest problem at the moment with Lyme being a close second followed by Bartonella. With that in mind, we will be treating the Babesia infection to start with and then will move on from there. We also discussed my POTS (Postural Orthostatic Tachycardia Syndrome) difficulties and how to best manage it. My heart rate when sitting was 80 bpm and blood pressure 90 something/70 something. After standing for less than two minutes, my heart rate had jumped to 111 with a BP of 80-ish over a diastolic too low to register. These wacky vitals are caused by autonomic dysfunction and for now we will be trying to control that with another medication. Of course I will also be adding probiotics to the daily regimen to help keep the GI side effects at bay as well as a couple of herbal therapies.

As long as I am able to keep from losing any more weight, and I don’t have any cardiac complications (unlikely but with a history of QT interval issues, its needs to be kept in mind), this will be the plan of attack for the next six weeks when I’ll check back in with an update. If all is still going well then I’ll continue on until my next appointment in 3 months. We were told that I can expect to be in treatment for at least 18-24 months. Battling Lyme and co-infections is a long road but I’m so glad to finally be taking some steps forward! What’s that cliche? A journey of a thousand miles begins with one step?

Overall I am incredibly encouraged by this appointment and I feel very blessed to have access to this type of care. Because most Lyme treatments and doctors are not covered by insurance, its a very costly illness to treat. I am beyond grateful for such a supportive family who provide the means for me to have an opportunity to get better. I’m grateful that I have found a doctor willing to treat me. I’m grateful that after all these years, I finally have a diagnosis that explains all of my symptoms. And once I get these treatments started, because I’ll feel worse before I feel better, I’ll be grateful for my comfy couch and extensive blanket collection!

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A Diagnosis!!!

“We would know if you had Lyme disease.”

“Well do you have a skin rash?”

“Chronic Lyme is something doctors say to take advantage of their patients.”

“If you had Lyme, you would have the antibodies and would be able to tell from your white count.”

These are all comments I’ve been met with when I’ve asked about Chronic Lyme Disease to doctors I’ve seen in the past. A couple of years ago my primary care doctor ran an ELISA test to appease me and lo and behold, it was negative. This isn’t too surprising as that test is known to be very inaccurate and misses about 60% of Lyme cases.

Over the years I’ve been given several disjointed diagnoses for the symptoms that have cropped up all over my body. The constant headache was NDPH, the low blood pressure, chest pain, heart palpitations, PVCs, and pre-syncope was POTS, the weight loss and nausea was labeled idiopathic when all of my test came back clean, the blue fingers and toes were idiopathic Raynaud’s disease, the debilitating fatigue was Chronic Fatigue Syndrome… None of these things were tied together though and there was never an underlying cause found. While the diagnoses themselves are probably accurate, I couldn’t accept that they all just happened out of the blue with no connection. So the research continued.

I had come across Chronic Lyme in the past but because it is so difficult to get properly diagnosed, I decided to knock out the easier possibilities that insurance would cover first. I was treated aggressively for NDPH (the most debilitating of all of my issues) but despite six hospital admissions, countless drugs, and a neurostimulator implant, I am still not well enough to return to working. You see, the CDC does not admit that Chronic Lyme is a real disease. They use the term “Post Treatment Lyme Disease Syndrome” and argue that 2-4 weeks of antibiotics is curative of Lyme and that sometimes the symptoms just persist but there is nothing to do about it. This means that insurance companies do not have to approve any Chronic Lyme treatment, making this a very expensive disease to manage because so much of it is out of pocket. This is also why there are so few physicians who will treat it. There are only three Lyme specialists in the state of Indiana.

When my long awaited admission for a 5-7 day Lidocaine infusion was not approved by insurance, I decided to chase down the question that has always been in the back of my mind. The more I learned about Chronic Lyme, the more I became convinced that it was the answer. Not only did it explain my current symptoms but it also explains so much of my milder issues I dealt with in high school. I reached out to the International Lyme and Associated Diseases Society for help in finding a Lyme literate doctor in state. The first LLMD was right here in my town but is so overwhelmed, she cannot accept any new patients. The second phone call I made was to the doc about two hours away from me. She was also swamped and would not be accepting new patients until the end of August and would be scheduling those new patients for October or later appointments. Finally on the third phone call to a specialist three hours north, I had the orders for the more accurate test along with a test for a co-infection called Babesia.

One week later on August 21st I got the call to say that I did indeed have Lyme and Babesia. As strange as it sounds, my family, friends, and I were thrilled! When you have lived with a mysterious illness for so long and watched as everything that makes your life yours crumble away with no way to stop it, finding a name for that demon is like Christmas morning! Now that it has been named, we can better know how to fight it and hopefully achieve remission.

Chronic Lyme Disease is difficult to treat because the bacteria is so smart. It can exist in the body in the form of spirochetes, cystic bodies, and biofilms. The co-infections make treatment even more complicated and while I have been tested for one, I have several symptoms of another called Bartonella. So much of the treatment is holistic, meaning there are a lot of diet changes and supplements which are all out of pocket expenses making it a very costly disease.

This is just the beginning of a difficult battle ahead as treatment can be brutal but it is a battle I’m so ready to take on. Finding a diagnosis has been so helpful mentally and emotionally because now I know that no matter what any doctor has said to me in the past, I am not overly dramatic. I am not a drug or attention seeker. I am just a girl who knows her body and refused to give up on finding an answer.

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I’m a Failure, and That’s Ok

Recently I was thinking about where I am in life and I realized that by worldly standards, I am a complete failure. I am 24 years old and I didn’t get my degree, I haven’t been married, I can’t hold a job, and all of the goals I set for myself at high school graduation have not been met. To look at me on paper is to see someone who has completely missed the mark when it comes to “adulting”.

However, there are so many things under the surface that have shaped me into a much more mature and capable woman that I don’t believe I would have learned had my life gone according to my own plan. I’ve become much more confident in myself because I have had to advocate for myself with doctors and insurance companies on a regular basis. I’ve learned to be much more laid back because it is physically painful to get upset about things. I’ve learned to appreciate the little things because so often the little things are all I can manage. I’ve become much more tolerant of other people because I have to carefully allocate my energy and it takes too much brain power to overthink what other people are doing. Best of all though, I have become much more grounded in my faith.

When I first got sick I was attending Texas A&M University and loving my animal science classes. When everything came crashing down around me and managing my health forced me to have to withdraw from school, there was a long period where I was so angry with God. Why does it seem that every time I almost reach my goal, something snatches it away? I felt like the dud child. Over the past couple years though, I could feel God chipping away at my anger and beginning to change my heart.

I began to realize that my tantrum over not getting my way was never going to change things. This is the hand of cards I was given and I could either continue to be angry and bitter about what I can’t have, or I could find the good in my current experience. I began to study the word with more intention and really began to apply what I was reading to my life. Until this point my faith was child-like and I was praising God in the good times, but not in the trials. When the difficult times came, I was sitting in self-pity and completely ignoring God’s promises to me.

I don’t mean this to say that I think God has caused my troubles. I know that illness is not from God but can absolutely be used by him. I know that he uses all things for the good of those who love him. I know that he has plans for me to prosper and not to harm me. I also know that my human perception is not the same as his divine knowledge. What looks to me like my world crashing down and my physical body being broken, is actually causing something much more important to be strengthened. My relationship with God is growing much deeper roots through my physical struggles in a way that likely would not have happened had things gone according to my own plan.

I am a failure by the worlds’ standards but I would never want to gain the world and lose my soul. Life has become so much more enjoyable since deciding to genuinely trust in God’s plan for me, even when it seems so unfair and nonsensical I can’t figure out how any good could possibly come from it. I no longer see myself as the child who failed to launch and I don’t define myself by what I have or haven’t accomplished in life, but rather I rest in knowing that I am loved by the creator and the hope of everlasting life.

James 1:2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking in anything. 

Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 

Jeremiah 29:11 “For I know the plans I have for you”, declares the Lord, “Plans to prosper you and not to harm you. Plans to give you hope and a future”. 

Matthew 16:26 What good would it be for someone to gain the whole world, yet forfeit their soul?

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Inside My Head 

Today I was thinking about just how much thinking I do all the time. I realized that I spend most of my time considering things that most people probably never give a second thought. I woke up today extra dizzy from low blood pressure caused by POTS (Postural Orthostatic Tachycardia Syndrome). I knew the best way to manage that was to drink lots of water and eat lots of salty snacks. That sounds simple enough, right? Unfortunately, POTS is not the only way my body fights me. I also had to gauge how much nausea/abdominal pain I was going to deal with today. If I go ahead and eat, is that going to make me too nauseated? Is my stomach going to bloat and be ridiculously uncomfortable? Is it going to cramp up and hurt? Then there was the catch-22 of needing to drink water to combat the dizziness, but drinking lots of water means needing the bathroom, and walking to the bathroom causing dizziness.

This is all just to manage one symptom of one issue. I also must juggle finding the settings on my stimulator to best control the head pain, judging how much energy I have for walking around and knowing where the next place to rest will be, taking meds on time, trying to think through the brain fog, not pushing too hard and causing joint and muscle pain to flare, deciding when to risk eating foods that have the potential to make me sick and when to play it safe… and this is just for my body. I also think about all the things everyone else juggles too like carrying on conversations, making sure my dog is taken care of, being where I need to be when I need to be there, and so on.

While my body is at rest a lot of the time these days, my mind is not. Its usually a whirlpool of thoughts and questions. The more practice I have living with these chronic curveballs my body likes to throw me, the better I get at managing them, but there are definitely time it gets overwhelming, and times when, no matter what I do, the best I can hope for is a better day tomorrow. That’s ok though because at the end of the day, that’s really what everyone is doing! My curveballs come in the form of my body rebelling but we all have things we must overcome. We just do our best in the moment and keep moving forward!

 

 

 Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

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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. 

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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.