Lyme Disease

Lets Be Real

Living with an illness every day is draining. Just imagine yourself having a constant cold for years and that gives you a small glimpse into what it’s like. It is a fight to stay positive on a daily basis. Which I am failing at routinely more recently.

My Lyme journey ebbs and flows constantly. I will be steadily improving and beginning to hope that full healing is possible and then it comes crashing down. I have grown in not letting despair overtake me when this occurs, but the last month and a half has been a real challenge.

It is a frustrating process trying to figure out why I backslide health wise. Is it something I’m doing/not doing, treatment not working or just the nature of the disease? A lot of trial and error to figure it out. Most of all prayer.

The discouragement can be overwhelming as I watch these years move steadily on. Social media is great because it helps me keep up with people (on a surface level that is) but it also leads me to a place of discontentment. Seeing my friends starting a family and traveling stirs up jealousy. So, I’m trying not to scroll through social media anymore. Learning to be content with where God has me. Never imagined that most of my 20’s being taken by poor health, but I know God is using this time (even if I don’t see how yet).

Lets be real though…I am tired. Tired of it all. Thankful for God’s strength because without it, I would have given up a long time ago.

 

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Lyme Disease

5 Things I Have Learned From Living With a Chronic Illness

Living with a chronic illness will teach you a lot. I do not know what it is like to have always lived with an illness, but I do know what it is like to have to suddenly completely alter one’s life around one. There are more then 5 things that living with Chronic Lyme Disease has taught me, but here are 5 that I have been processing through more recently.

Beauty in the Moments

To often we take the simple things for granted. Some of life’s most beautiful moments are found in the quiet everyday occurrences. When you have an illness, these simple moments you see with a whole new light. They are moments you long for and hold tightly to for when you need a little hope.

While enjoying dinner at a restaurant with conversations surrounding me, my adorable nephew suddenly slides his arm through mine and looks up at me with his joyful brown eyes. He just leaves it there, continues eating and steals sweet smiles with me. A moment that brought such joy and continues to!

Or how every night when my husband gets home, he yells “Beautiful woman! I’m home!” and kisses me exclaiming that this is the best part of his day. He does this every single day. He makes me feel cherished with that simple welcome.

The Power of Presence

Until I spent hours upon hours alone day after day, I did not comprehend how powerful the presence of another person was. My family has surrounded me with their support, but they all are busy with work and life so it left a lot of time by myself. I have longed for companionship! It is difficult to cultivate new relationships when one is home bound…or rekindle old friendships.

My family has given me their companionship as often as they can. From making special trips just to see me, going with me to doctor appointments, sitting with me during treatments or making sure I’m not alone when I’m in my worst pain. These are just a few ways my family gifted me with their presence during my greatest isolation.

My best friend, who lives states away, has called and texted me frequently. When she could not get a hold of me, she checked in on me with my husband. She may not be able to be physically present but she is so present in my life! Her love and consistency through this difficult season of life has meant so very much to me.

Their presence is a strength, an encouragement and it’s healing to my spirit. Even though I am no longer home bound, the feeling of isolation continues (although not as strong as before). Never doubt the power of your presence in another persons life!

Self Care is Vital

I believe this is important for everyone, but when you have a chronic illness it is mandatory. If I do not take the time for self care daily, I am not able to function. Most of my self care is for my body through healthy meals, exercise, rest, sauna, massage and salt baths. All of these things have been vital for my healing and maintenance. My life is very routine and planned ahead. I do not do as well with last minute things because I have to be sure to have the rest my body needs daily. I miss the days of spontaneity!

Self care emotionally is important as well. Make sure to do something enjoyable and fun! This does not require spending money. Some of our favorite things are to go to the beach (or just anywhere in nature), play a game, read, watch a movie (at home) or just go for a walk. Try even for 15 minutes a day, it can reshape your perspective.

One’s Attitude Determines Your Reality

We may not always have control as to what happens to us in life, but we can control how we respond. Your attitude has a significant affect on your life. I have seen this to be true every day of my illness. When I respond to my circumstance negatively, it affects not only how I perceive my reality but it also affects my reality. It’s not just emotional. Your attitude affects you physically as well.

My body responds to how I think. The pain in my body grows stronger the more negative or stressed I get. It is actually quite amazing how quickly my body reacts. How we respond is a choice. I am definitely not always successful, but I am learning to stop myself and check my attitude.

Interacting With Pain is Difficult

It is difficult to know how to interact with people’s pain. What do you say? What should you not say? It can be uncomfortable. From my experience, I just desire people to make themselves known. A call, letter, text, or any form of communication from someone letting me know they missed me, were praying for me or thinking of me goes a long way. When people make themselves known or available, it makes it easier to share the pain with them.

Through this season of my life, I am also learning how to interact with my own pain. I have had a lot of time to think and reflect in the last couple of years. There has been past hurt and pain that I had not fully addressed and worked through. Holding onto pain only makes life more difficult. It is hard but healing requires interacting with pain.

 

 

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Faith, Lyme Disease

A New Dawn

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For the first time in a long time, I feel joy coming from within. The past few years have been some of the most difficult in my life and it has been a constant struggle to choose joy, no matter the circumstances. God has been so gracious and has given me such joy even while still in the midst of fighting this disease.

This joy is in part due to the progress God has given me in my health journey, but it is also because of the transformation within. I chose to change my blog because I have changed so much since I started over 2 years ago with Journey of Choosing Joy.

Why did I choose With The Dawn?

With the dawn…there is a new beginning. Every day we wake up with a fresh start. From the moment our eyes open, we make a choice as to how we are going to approach the day. We cannot control what the day brings but we do have control over how react.

With the dawn…give thanks to God. Every day that God grants us on this earth is a gift. Due to my illness, I have come to appreciate each day more. Even the normal, mundane parts of life are beautiful. I used to take these normal things for granted. Now I leave the grocery store with thanksgiving!

With the dawn…God is calling to us. I encourage you to seek to know God more every day. It is through daily surrender and intimate pursuit that we come to know the heart of God. Only through Jesus can you truly find life.

 

 

 

 

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Lyme Disease

The Daily Fight Against Chronic Lyme Disease 2.25.16

My life looks very different then a healthy 27 year old normally would. It is full of timing medications, doctor appointments, lots of food prep, detox routines and continually having to change my schedule due to my health. Sometimes it is ugly and difficult, but there is such beauty in it as well.

I am continually amazed by God. He has created our bodies to do all sorts of awesome things! If we treat our bodies kindly by watching what we put into them, exercising and making sure we detox properly then our bodies will function better. Sometimes we have absolutely no control over what happens to our bodies and how it malfunctions but we do have control over how we treat it. I can only imagine how if I had lived a healthy lifestyle like I am now before I got this disease, then my body would have been prepared to fight this disease.

There are many lifestyle changes that I have had to make, but the most difficult has been my eating habits. I have strict dietary restrictions that entail cutting out gluten, dairy and processed sugar (although I also limit my daily natural sugar intake as well) and primarily eating organic. A lot of people mean so well and are quick to tell me or show me the gluten free options at whatever event I am at, but most of the time I am not able to eat it even if it is gluten free. So what do I eat? Select protein, fruit and LOTS of vegetables for the most part. I generally don’t eat anything from a box or can but only fresh. It was terribly difficult in the beginning but it has gotten easier over time. I hear a lot from people that buying organic is just to expensive and that they could never do it. It can be expensive but I see how different it makes my body feel when I eat organic versus non-organic. If you can’t do organic, you can still get fresh produce at an affordable price. Although I may not always be as strict as I have to be right now, I will continue to live a lifestyle where I eat fresh. A phrase I say numerous times a day is You are either FEEDING disease or FIGHTING it!

Since my body is so overwhelmed with toxins, I spend a lot of time making sure I am detoxing. I have learned through testing that my body does not detox properly, so I have to make an extra effort to help it to do so. How I eat is one way I help my body detox but these are some more ways. Daily I have a fresh green juice (that my husband lovingly makes for me before he goes to work in the morning), use parsley or burbur drops, and a detox foot/full bath. I attempt to do dry skin brushing, re-bounder, and hot/cold showers to get my lymphatic system going but have not become the most disciplined with it yet. But I will get there! I go to the gym for a light workout 3-4 times a week and end it with 30 minutes in a sauna (this is time consuming but so beneficial). Also, twice a month I have a Lymphatic Drainage massage or a Swedish massage to get my lymphatic system going and ease the pain I have daily. I am sure I am forgetting something but these are most of them. These can all be time consuming so I have to be very disciplined in order to maintain it all. When I slack off or my routine is thrown off, I feel the effects. So, it is so very important to keep up with it.

Another part of my day is making sure I am timing all my meds appropriately. I take a lot of supplements, herbs, and homeopathic meds that all have different times in the day that I need to take them. Some of them can interact so I have to be sure to space them accordingly. So, those who see me a lot know I take a travel med case everywhere. I also bring my essential oils everywhere with me! You never know when a need for them will arise.

Rest. I daily have to make sure I have time in my day for rest. Some days I need more time then others but it is a daily thing I must have. When I fill my day up it really wears on me and the repercussions are not fun. If I don’t get the rest my body needs, I can be on the couch for days. So, I have to say no to a lot of things, pray people will understand and that they won’t stop inviting me. The isolation can be very diffic

   The years since I have been sick have been very difficult. I know God can heal me in an instant but He has chosen not to for whatever reason and I may never know what that reason is. What I do know is that God is in control of my life and if me being sick brings Him more glory then me being healthy that is what I want. That does not mean I have stopped asking for healing. Sometimes it is a desperate cry for Him to heal me but I ultimately have perfect peace no matter how He answers my cries. Even if I never feel completely healthy again in this life, I will continue to praise and trust in God. Going through this has caused me to really think about suffering in a way I never had before. People interpret Scripture in regards to healing very differently and some can be very painful to those who have not been healed. Through painful interactions, it has led to a deeper study of what God’s Word says about suffering and healing. May it all be for His glory.

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Lyme Disease

It’s a Marathon, Not a Sprint 11.12.15

It has been over a year since I have posted! I kept meaning to wrote more posts but I had a difficult time putting thoughts down. It has been a year of highs and lows for sure! Here is a little update on how I am doing and thoughts as I continue on.

In this past year, I have had months where I am in bed or resting at home more then anything else and months where I was able to be more active. Months where I was having more good days then bad and months when the bad occurred more then the good. During the summer, I was going through a better time and decided I was able to try to work part-time. I was a little nervous and was prepared for it to take awhile because I had so many limitations. God is so good! He provided me with a job where my boss knows about my situation and was willing to work with me. I was starting to look for a job in June and started work the beginning of August. Thankfully, I have been able to maintain 20 hours a week. Such a blessing!

August was a month full of change! I started working for the first time after 15 months of not being able to, Andrew started a new job (which is also an awesome God story that I will write on another time), and we signed a lease on a condo. Exciting and overwhelming all at the same time. We moved into our own place in September and we were so excited! It almost felt like it was a first place for us since we had been living with my parents for so long and felt like we were in constant transition. As exciting as it was, it hasn’t necessarily been an easy transition. Adjusting to knew jobs, me just adjusting to working again with my health, and figuring out a routine for the home has been difficult. With all of this, I definitely pushed myself to much and now I am paying for it physically. For our 3 year anniversary, we stayed in town and planned on doing some fun activities, but as usual, we had to adjust those plans due to my health. We were able to enjoy a sunset sail that weekend and so enjoyed it!

Where am I with my health? Currently I am not having as many good days as I used to and the severity of my symptoms have increased to a point that I have not had in a while. When this occurs, it is hard to determine whether it is due to the repercussions of the treatment I am doing, I have pushed myself to much, or if it is an indication that the treatment I am doing is not working. It takes a lot of prayer, learning to read my body, and patience as we continue forward in treating my Lyme. One thing that has significantly improved is my sleep! Some of you may know that I was having some major issues with sleeping. On a level I had never before experienced. I went months of not being able to sleep until 4 or 5 in the morning and sometimes not at all. With the help of a sleep test, we were able to determine what was causing my extreme difficulty and I am taking supplements to help correct it. So far it is working!

God’s presence is what helps me continue. He is teaching me so much. Through this journey, I have felt like I have lost a lot of myself but God is really molding me into the person He desires me to be. I have gained a perspective on things that I never would have if I had not gone through this and God is giving me a heart and passion for new things! In my coming posts, I want to share about some of these things with you. These things include my new found passion for healthy eating, natural remedies, what God is teaching me, what God has placed on my heart for the future, and other random topics. For my next post, I want to share about Essential Oils. They have become a large part of my daily life and have helped me a lot. My mom is the one who introduced me to them (along with a lot of the natural things I do) and I am so glad she did!

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Lyme Disease

A Glimpse Behind the Facade 10.3.14

     IVI have become used to putting on a facade. If someone were to just look at me they would never know that I was sick. I look healthy. People often times say “Well, you are looking good!” and I respond with an appreciative “Thank you.” I do take this as a compliment but when I am having a more difficult day I think “If only you knew.”

The people who have known me for a long time see that I have lost a noticeable amount of weight. This is normally a great thing, which I wish I could say was achieved by hard work and discipline. However, the weight loss is due to Lyme Disease. I am struggling to maintain the weight that I am at and not continue to lose. Never did I think I would say that!

In some ways, I am thankful that I do not look sick for it assists in creating a credible facade. But a lot of times it can be frustrating because people cannot see the reality of my life. Questions that I commonly hear are “So what exactly are your symptoms?” or “How exactly do you feel?” I love and hate these questions at the same time. I appreciate it when people are interested but it can be difficult to explain. But for those of you wonder, I am going to attempt an explanation.

Constant Fatigue: This was probably the first symptom I started to notice back in college. It was an overwhelming fatigue like I had never experienced before without due cause. It was the kind of fatigue I would experience after pulling an all-nighter for a paper or project in college (which I only did a couple of time because it was miserable!), but it was after a full nights sleep. It is rare for me to feel much energy. Sleeping has proven a difficulty as well, so that only makes the fatigue worse.

Gastrointestinal Issues: I started becoming sick after almost every meal. A big culprit I figured out was sugar so I started limiting my sugar intake. This helped but did not fix the issues I was having. Now I am on a gluten free, dairy free, low sugar, and all organic diet (never thought I would be this extreme!). There are some food/drinks that will just knock me out and all I can do is curl up in fetal position. These changes have helped a lot but it is still a struggle. I know these changes in my diet have contributed to my weight loss but it is not the sole cause.

Painful Joints/Muscles: There are some days where any form of movement (and sometimes touch) results in excruciating pain. The mornings are almost always the worst, but there are days that it is more of a dull pain by afternoon. So, I do see treatment working slowly!

 Cognitive Issues: For the most part over the past few years, the changes I noticed cognitively were more frequent confusion, foggy brain, slower cognitive responses, very forgetful and just slower in general. As frustrating as these symptoms are, at the beginning of this year I was seeing that I was struggling to form words or sentences at times.

These are the four symptoms I experience constantly and that are the most extreme. However, there are a whole slew of other symptoms that I face. Some are difficult to describe but I always find it interesting how when talking with someone else with late stage Lyme Disease they can finish my sentence and know exactly what I am talking about! It is so refreshing and encouraging!

So, when most people ask how I am feeling I respond with a “I’m feeling pretty good” because it is so much easier then the reality. I get nervous to share with people about how I am feeling because I worry about what they are thinking. Do they think I am exaggerating? Over reacting? Most people (including myself at one time) do not think Lyme Disease can have such a negative affect on people. That it can become debilitating. Chronic/Late Stage Lyme Disease is a big controversy among doctors. I have seen many doctors who say it does not exist and 2-4 weeks of antibiotics will cure it. If the patient still has symptoms after then it is termed Post-Treatment Lyme Disease Syndrome. Which I do not believe is the case. So, I become anxious when talking about it.

I am undergoing long-term treatment and I have seen some progress. But it is slow. It is more of a marathon than a sprint. We are facing a small speed bump in my treatment, but I know the Lord is in control. He has been so faithful. It is only by His hand that I will experience any healing. Even if my prayers for healing are not answered in the manner I desire, I will continue to trust in Him. God does not promise us health here on earth, but He does promise His children that He will be with us. His love is steadfast and He is faithful. This pain my body is in each and every day only serves as a reminder that this world is not my home. This life here on earth, in this body, is only temporary. I will experience eternity with my God in Heaven and there will be no more pain. How sweet that will be!

 

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Faith, Lyme Disease

Identity Crisis 9.24.14

One of the most difficult things I have faced in the midst of fighting chronic Lyme Disease, is how much it has changed me. Now, physically I have changed drastically, but what is most difficult is how it has affected me down to the core of who I am. I do not feel like the person I used to be. The person I remember was outgoing and loved meeting knew people. Now I am shy and find it extremely difficult to get to know people (which made it terribly hard when I barely knew anyone in both WA and CO). The person I remember was independent, but now I find myself painfully dependent on others. The person I remember loved to laugh from deep within. Now laughter does not come as naturally and I find myself forcing the appropriate chuckle when necessary. These are just a few of the changes that have occurred. It has felt like this disease has stolen so much of who I am.

This has not been a change overnight. Just like the disease has slowly ravaged my body (which I never imagined Lyme could do!), it has been a slow change within. As this changed occurred, I found myself becoming angrier and angrier at what was happening to me. It was only as of this past April that I knew what was the cause of all this. Before that, I had years of wondering and worrying about what was going on. I thought that if I knew what was going on I would not feel so hopeless and empty inside. That was not the case.

It was about the time that I received the diagnosis that I was hitting my lowest point physically. I was working full-time at a job that I thoroughly enjoyed, but was getting to the point that I physically could not do it anymore and it was exhausting hiding that fact. It was a relief to not have to wonder anymore. There was an answer and possibilities of treatment….hope!

We were thrown a curve ball and we needed to move in order to seek treatment. Andrew and I had to leave our jobs (which I was going to have to do either way) and in a matter of 5 weeks moved across the country. Those 5 weeks seem like a blur to me now, but it was exhausting both physically and emotionally. Getting to Florida was an absolute relief. I was finally able to rest and have the loving support of my family (which I always had but there is nothing like their actual presence).

After the initial relief of being home, I began to feel more and more like I had lost myself along the way. Now I not only felt like a different person, but I had absolutely nothing to do to fill my time and felt purposeless. I was not up to doing much at the beginning of treatment. So I had A LOT of time to think! This summer I hit my lowest in my identity crisis. Everything that I used to identify myself with had been stripped away. I felt like nothing was left of my old self….but I was so so wrong.

Not everything had been stripped away. The most important thing in my life can never be stripped from me. That is my relationship with my Lord and Savior. I have come to the understanding of what it truly means to find your identity in Christ. Having grown up in church, I have heard countless times that our identity is found in Christ, and if you had asked me, I would have honestly said I did. But it was not until everything, both in my circumstances and within, had been stripped away that I saw that I had not grasped this truth. I am a child of God and it is only in Christ that my identity can be found. I love Colossians 3:1-3, which says, “If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. Set your minds on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God.” The most important part of me can never be stripped away!

This truth does not change the fact that this disease has changed me. In many ways, this is a gift. For one thing, if it was not for all of this, I would not have come to know what it means to truly find my identity in Christ. I find myself thanking God for Lyme Disease….crazy I know! In other ways, it is a difficult fact to swallow. I know that some of the “old me” will resurface as my body undergoes healing, but I will forever be changed. I will never be the person that I once was before this disease started to noticeably to affect my life and that is okay.

Even though most of my days are very quiet and I find myself having lots of alone time, I still have a purpose. My purpose, whether in sickness or in health, is to know and enjoy my God. When I don’t feel like the person I once was, I am able to seek the things that are above. On the days when I find it difficult to get out of bed, I am able to set my mind on things that are above. So, for as long as the Lord has me in this place, I will choose joy.

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