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In Honor of the Greatest Teacher I’ve Ever Known

When I think about the end of my life, whenever that may come, what I would want to leave behind is a life well lived. I would want my family to have the comfort in knowing that I entered the gates of Heaven hearing, “Well done, my good and faithful servant”. I would want the people that have come in and out of my time on Earth to be left with positive memories and to have lived with love. I would want to be remembered as someone who loved God and loved people. One woman who has encompassed each of these hopes is the greatest teacher I’ve ever had the honor of learning from, Sherree Fell.

Ms. Fell taught my senior English class. When I think back on the feelings I had when I entered her classroom, I always remember it as a place of comfort and encouragement. More often than not, Ms. Fell had students stopping by to spend some time in that room during lunches and free periods. She was one of the most genuine people I’ve known and was always very real with her “kids”. She didn’t shy away from topics that required her to show deep personal emotion. I remember hearing about memories she had of her parents and every now and then, those memories would bring on a few tears. While she may not have had biological children, she loved each of her students with parental ferocity.

I never once saw her give up on a student, no matter how difficult they may be. Instead, she pushed us to recognize our own potential and made sure that we knew that we were loved, and because of this love, she wanted the best for us, even if what was best for us meant trying our hardest on an assignment we didn’t really want to do. I had never before nor since experienced that balance between caring on a personal level while also maintaining a student/teacher relationship the way Ms. Fell had perfected.

I know that this woman who was an angel in many lives while she was here, is now celebrating in Heaven, but her loss leaves a gaping hole in the hearts of those of us left behind. The halls of Clay City High School will never be the same without the happy-go-lucky, sometimes a little louder than appropriate, bubbly woman that devoted so many years of her life to teaching. While I can’t speak for her family, in my own experience, loss of this magnitude is more painful than words can describe. Those of us who were lucky enough to have an imprint in our lives made by Ms. Fell will think of her often and remember the wonderful woman she was.

The depth and breadth of grief we all feel is a sure sign that Sherree Fell led a life of love on a scale most of us can only aspire to. In the words of A.A. Milne, “How lucky I am to have something that makes saying goodbye so hard.”

 

 

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My Support People are Awesome

Living with a chronic illness is hard. Like life-altering, crash-course-in-perseverance, dig-deep-to-find-the-will-to-live kind of hard sometimes. Caring for someone with a chronic illness is also hard. I’ve had my fair share of encounters with people who make me feel really alone and misunderstood but I am incredibly blessed to have a family that has proven to be a champion support system. Chronic illnesses can be tricky for support people because, unlike the nature of acute illness, there is no “get well soon”. By definition, a chronic condition isn’t going to go away. Its the new “normal” everyday life and when the traditional flowers, cards, and casseroles aren’t appropriate, it can be a struggle to figure out what exactly is the best way to show you care. With that being said, I wanted to acknowledge the absolute best ways my family has shown me love and kindness through this journey.

1. They believe me when I talk about symptoms. 

This one is by far the most important to myself and many other people battling an invisible illness. When I complained of a headache that lasted for weeks, I wasn’t told I was weak or exaggerating. When I say I’m in pain, I’m not treated like a drama queen or a wimp. When symptoms began cropping up in every body system possible, I was taken seriously and not treated like an attention seeker even as my list of specialists grew longer and longer. This is so incredibly helpful because in the medical community, invisible illnesses are often brushed off and the patient is pigeon-holed as a drug or attention seeker or as a hypochondriac. Knowing that your family is standing behind you, ready to fight with you and advocate for you means the world.

 

2. They respect my limits. 

Before I got sick I could keep up with the rest of my family with no issue when we vacationed in Disney World and spent 12 hours a day at theme parks for several days in a row. If I wanted to go for a jog, I just put on my shoes and ran out the door. I could hold my own in a modern dance class (at least when it comes to stamina. I am a terrible dancer). Now however, there are days when just walking to the back door to let my dog outside leaves me winded and dizzy. Other days I am able to do more depending on how I’m feeling but it always varies from day to day. When I need to lay down or just can’t handle going for a walk, my people don’t push me to do it anyway. This takes so much stress out of social events because I know that when I say I need to leave or take a break, I won’t have to worry about upsetting those I am with and adding more guilt than I already feel.

 

3. They still invite me on outings. 

Going along with respecting my limits, my family members haven’t stopped inviting me on adventures. There are a lot of times I have to turn down the invitation but that choice is left up to me. Because my symptoms can vary so much day to day, I really am the best person to decide if something is a possibility for me. This means that when I log onto social media and see pictures of my people having fun, I can enjoy seeing them living life without the nagging hurt of feeling excluded or forgetten. I know that they would love to have me along but they also understand when that isn’t an option.

 

4. They help me with things I can no longer do for myself.

I live in a house with no one to take on the chores I’m physically unable to do anymore. For the past two years, I haven’t had to worry about my lawn growing out of control because my grandpa comes by regularly and mows for me. My dad planted flowers alongside my house when I was too weak and tired to do it myself and my mom and grandma have done the same in the past. In my worst times, my mom has cleaned my kitchen and my cat’s litter box for me. All of these acts of kindness were done without me asking and without any strings attached. It makes being home so much less frustrating when I don’t have chores piling up that I can’t tackle.

 

5. They keep talking to me about their lives.

My medical life makes up the majority of what I have to contribute to conversation. For me though, its just my life. Its not a sad story or something that is more important than the issues healthy-bodied people face. I’m not an “inspiration” or made out of anything magical that gives me the strength to make it through extraordinary circumstances. I’m just a regular person who currently happens to be dealing with health stuff. We often view health struggles as something that “puts life in perspective” and reminds you to not complain about life. But I love to hear about whats happening in my people’s lives, positive or negative! I am still me and I still care about what others have to say. It makes me feel like I can still be a real human with real human relationships when I can have conversations with people in the same way I did before Lyme took over.

 

6. They respect the choices I make regarding treatments and doctors.

One thing there is no shortage of these days is unsolicited medical advice. It seems like there is always a new miracle program being sold and those with chronic illnesses are often the targets of these marketing strategies. There are so many buzzwords in the media regarding healthcare and specific medications like antibiotics and opioids and everyone has an opinion. My family members are very good at showing they care by taking the time to read articles about treatments and discussing things with me, but ultimately respecting that my treatment plan is a personal decision discussed and decided on by my doctor and myself. They know that I spend countless hours doing my own research, that I know what I have tried already, what success rates are of different protocols, what is most likely to help me, and that I know my body best.

 

7. They send me thoughtful things. 

A sure way to make a rough day brighter is to be on the receiving end of a caring gesture. This can range from a simple text to check in with me, to my aunt introducing me to a new artistic outlet through painting supplies, to getting a “happy box” in the mail. In college, when things got tough, I would sometimes get a package at my door from my mom filled with things to make me smile. She would send me tasty treats, encouraging notes, usually a unicorn of some sort, and whatever else she thought might make me feel a little better. During a hospital admission my cousin once spent an afternoon sending me photos of “daily odd compliments” to entertain me. Being reminded that there is a cheering squad behind you when you’re going through hard times can make such a huge impact. Being reminded I’m loved and cared for keeps my hope alive and my attitude positive.

 

Taking the time to be grateful for the blessings you’re given in life is important and not a day goes by that I am not thankful for my close-knit family. I don’t know how I would make it through life without them! If you have someone in your life going through a difficult season, I hope this list can be helpful in understanding how to best support them.

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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.