Why is it so hard to be JOYFUL?

C. S. Lewis wrote, “Joy is the serious business of heaven.” He’s right. We are all supposed to long for the day we will be with God in heaven and be surrounded by and full of JOY! So I started thinking about what we do every day while we are here on this earth. I realized that, at least in my case, I don’t feel joyful. I don’t wake up feeling joy. I wake up and think, “I don’t want to get out of bed.” We all probably wake up thinking of all the “bad stuff” we HAVE to do that day. All the errands, the day to day grind, all the "to do lists" - those are what we think about when we wake up. Or at least I assume that’s what most of us do. I thought about how we focus on the negatives of the day instead of the positives. We don’t wake up thanking God for giving us yet another day to spread His love and to feel JOYFUL! In fact, I think joy is the furthest emotion from my heart upon waking up each day.

These thoughts hit me hard. Why is it so very hard for us to be joyful? Why do we fail to see all the positives of a new day? Why do we not thank God for another chance to work on becoming more like the person He planned for us to be? Personally I have found myself in a “poor pitiful me” state as of late. Treatments are hard. Getting to the treatment center every morning at 6:40 a.m. and every afternoon at 3:20 p.m. is so hard. There are no breaks except for all the cancelled sessions we’ve had due to snow and ice. That’s another thing – the weather is horrid and has me in a down mood. I go to treatment most mornings and the temperature ranges anywhere from 10 below zero to a balmy 20 something degrees (note the sarcasm when I say “balmy”). As I write this it is 12 degrees outside and it’s already 11:00 a.m.! All of this is hard but the drugs are especially hard on my body and my mind, or at least my mental state! I haven’t gained any weight and I stay exhausted. I have to take so many anti-seizure drugs that are mood altering drugs and “downers”. Add to that the 200 mgs of IV Benadryl I take every day, the muscle relaxer, the MANY supplements, the anti-malarial drug for the Babesia, and the antibiotics (IV and oral) and it adds up to a body that is overwhelmed with medication and overwhelmed with such a strict schedule. Yesterday I woke up mad at the world because I HATE all of this. I hate it with a passion and I know that is a natural reaction after 8 months of treatment, 8 months of being away from my family and friends, 8 months of being in an “unreal situation” – one I never thought would one day be my daily life!

So yesterday I started to write this entry. It was yesterday morning during treatment that I began to wonder how I could come to hate something I prayed for so diligently. I prayed God would get me to this clinic and they would treat me. My prayer was answered. Here I am being treated and yet now my prayer changes yet again and I want to “GO HOME”. I cannot fathom how God deals with us humans! Here He has answered my prayer of desperation and I feel like I have become ungrateful for His answer. I feel like a spoiled child who cried for a new toy just to be done with it the next day. I feel guilty for not appreciating being here. I feel so unworthy of His love and grace – but He knows that. He knows it all. He understands my “lack of joy” over my current situation. Even though I rant and cry out, He knows that I do understand I am where I must be for now, no matter how hard it is. This is not forever, it is only a temporary situation, and He reminds me of that. He reminds me of His love. I have to stop and focus on Him and within minutes I feel humbled and undeserving of His continual presence in my life. When I focus on Him my problems seem to evaporate. I just have to remind myself to focus on Him when everything else seems to be falling apart. When I myself seem to be falling apart I must get on my knees and cry out to Him. He is always there, always with me, always watching over me and if I can get over own issues, if I can just stop focusing on the negatives, I can feel Him there with me. I cannot explain the sense of peace, calm and love that surrounds me when I feel His presence. Yet I must SEEK HIM in order to feel that peace. It’s so easy to look around me and find a million things to complain about, but what we all need to do is to refocus our vision so that our eyes are on HIM! I struggle with that every single day. I fail miserably so many times, but He graciously grants me another day to try again. He understands all of this and He carries me through in these times of trouble, but only if I put my full faith and trust in Him. That’s hard to do isn’t it? To give everything over to God every single day is not an easy task for us mere mortals.

After treatment I came home and ran across that quote from C. S. Lewis and I thought, “K, there is JOY in your heart because you are one of God’s children. He GIVES you JOY if you will stop long enough to receive it!” It was no accident that I flipped through a book and found myself staring at that quote about joy. It was God sending me yet another reminder that I must SEEK HIM. I must seek Him in order to receive the JOY He provides me with. From that JOY comes strength, peace, and contentment. Paul wrote about being content no matter the circumstances he found himself in. He was content when he was in plenty or in want and wrote he was content in sickness or in health because he found his contentment in GOD!

So I started to figure out a way to seek God, to force myself to find JOY in the midst of all of this. There is joy in treatment. There is the joy of friends who understand what you are going through. There is the joy of nurses who care so much for you and work so hard to do whatever they can to make you feel better. There is joy in the fact that God led me to this doctor who knows what is wrong with my body and is working on fixing it. I have to realize that there is no “cure” for Lyme disease, Bartonella, Babesia, etc. These “bugs” will live in my body forever but this treatment is knocking them down enough for me to feel better, to have a healthier life. I will probably never know “healthy” as defined by normal people’s standards. However, I will know I am healthier than I was by far. God can do anything and I never doubt that. He could kill all these infections in my body and He may very well do just that. However, if He does not that is not indicative of Him not loving me. It is just the path He has chosen for my life on this earth. I say treatment is a temporary situation and it is, but our earthly lives are also “temporary”. God said we would have troubles in this world but we can face those troubles with JOY if we focus on the fact that God is ever present by our side. With God anything and everything is possible. Sunday I came home from treatment and cried out to God that I could not handle this anymore. Within just a few days He reminded me that I might not be able to handle this, but He can handle it for me. That is a joyful fact. That is a fact that makes my heart full of joy.

Now my goal is to wake up every day and not get out of my bed until I thank God for giving me another day on this earth and to thank Him for the JOY He has placed in my heart. I know there will be many days that I fail to do that, but I am going to lean on God to help me to find the joy of His love in my everyday life. I can be joyful in this situation because God is with me and therefore who (or moreover “what” in this situation) can be against me? The devil loves to rob us of our joy. The devil feeds on our negative thoughts and bad attitudes and we have to put our feet down and tell the devil that he CANNOT steal our joy because God granted it to us and all we have to do is claim it!

“Our help is in the name of the Lord, who made heaven and earth.” Psalm 124:8 (NRSV)

“God rewards those who earnestly seek him.” Hebrews 11:6 (NIV)

“Isn’t everything you have and everything you are sheer gifts from God? You already have all you need.” 1 Corinthians 4:7, 8 (MSG)

Find joy in all you do my friends. It may be hard some days but that is when we have to remember that our help IS in the name of the Lord, that God rewards those who earnestly SEEK him, and that we do have all that we need if we have a close relationship with God! I pray we all find JOY!!! God wants us to be joyful – so claim joy every day! If you do I can guarantee that your outlook on life will change because God will change it. We just have to ask that He give us all new eyes to see that we can have joy in the midst of all of our “earthly troubles”. BE JOYFUL IN EVERYTHING YOU DO!!! Let people see love and joy overflowing from you! I pray for strength, for perseverance, for patience, and now I pray for JOY!

Oh, and this is a webcam shot I took of myself yesterday. No makeup, no shower, but thanks be to God - there is some JOY in there :)

Much love to you all!
K

Feeling His love on Valentine's Day

I hope you all had a happy Valentine's Day. It was my first one away from my sweet, M, but we're experiencing a lot of "firsts" throughout all of this. He did send pretty flowers and nice chocolates and that was unexpected and very appreciated. Mom and I have enjoyed having the pretty flowers around since looking out the window just means seeing more snow! It snowed here again today and I've decided that M could never talk me into living somewhere that snow is a "regular occurrence"! I feel like I live in a snow globe and just when it looks like it's about to melt away, someone shakes it up and the snow comes down again!

As for the medical side of things I have been seizure free for a month, as of last Wednesday! YAY and THANK YOU DEAR LORD!!! I still have to be very careful and one of the anti-seizure meds has been doubled but I'm not scared that I am going to have one every afternoon like I had been before! The new antibiotic is working on killing off more "bugs" and it has made me more tired than the Doxy did. Of course, the anti-seizure medication can do that as well but definitely the combination is making me exhausted. Bad thing is that even when I sleep I'm not able to go into "deep sleep" but I'm napping more and falling asleep earlier at night and I know my body needs that!

I saw the doctor Thursday for a "check & see how I'm doing" visit. We were supposed to have a full meeting, but she came into the treatment room and I was in some pain and running a fever. I have a kidney stone, I know - big shock, huh? haha. But that afternoon I had shown mom where my rib cage was sticking out further on the left side than the right and I was having pain there. I knew my spleen was swollen and when I showed the doctor the decision was made for me to skip taking Mepron on Saturday (that's the anti-malarial liquid medication I take once every 5 days to help kill the Babesia). The swelling in my spleen is from toxin build up which is good because it means we're killing stuff off! It hurts, but at least I know the pain is actually progress. I'm supposed to keep my feet elevated to help alleviate the pressure but then it's just a waiting game for the toxins to be flushed out of my body. I try to see the fever as a good sign as well. I pray that it's proof of my immune system trying to fight some of this stuff. The fever makes me feel pretty rotten, but I can take feeling rotten if I know there's progress being made and I do feel that! Praise the Lord, I do feel like I can finally see and even feel progress in my body! Now, the kidney stone pain is just icing on the cake - ha! Actually, that is a pain I'm used to having and as much as I hate pain medication, the doctor wanted me on some in order to not wear my body out from pain or weaken myself trying to pass a stone without medication. I'm taking some pain medication and along with all the other meds I do feel a little overwhelmed. My mom says the amount of medication I take would put her out of commission for weeks, but I'm so very thankful to God that my body can handle this much medication!

I do hate taking pain medication though because it can make me feel down and depressed. Of course, so many of my prescription medications (like the anti-seizure medications, the muscle relaxer, the IV Benadryl, etc.) are "downers". Add another one to the list and it's easy to see why I might feel low! It's hard to feel that way but I know for now I'm doing what I can to help my body. I also know God understands everything I am going through and how my system reacts to all these medications. He is still with me through the low times and it is always then that He seems to point out things to lift my spirits. When I realized I had another stone my first thought was, "When it rains, it pours!" and then I realized what a stupid saying that is. I had the idea of changing it to "When it rains, learn how to dance in it and be thankful you aren't in a drought!"

I know that I am "allowed" to have bad days when I feel depressed and I don't expect, nor am I capable, of handling this all without having a day where I want to cry, or scream, or just pull my hair out. I am only human and those are human emotions and reactions. However, I am very grateful that God allows me to see my "lows" as normal but also that He immediately allows me to recognize feeling depressed as a side effect of all the medications. That is important because He is allowing me to view this all as "temporary" instead of feeling like there will be no end to my misery or suffering. I know He gives me the eyes to see things, both good and bad, as part of His master plan for my life. I cling to that plan, to His love and promises more than anything else when things get to be a bit too overwhelming for me. I envision what plans He has for my life when I am at home and regaining my health. I try to keep my focus on what He is teaching me through all of this and every time I think on it, I get the same answer - FAITH. He's teaching me to put all of my trust in Him because to place it elsewhere is where I was going wrong for years. I loved God, I knew He had a plan for me, but I felt like I was the one in control of my life. I was so hard headed about this that it has taken me being stripped of so many things to see what God intended for me to learn - that without Him I cannot do anything. It's been such a hard lesson, but one I wouldn't trade for the world. I pray that I never go back to thinking I can do things "on my own", but I'm human. We humans just have a hard time with clinging to God and praying for His will consistently. It's easy for me to cling to God now when I need Him so badly. But as a human, I know that when things are going well in my life, maybe when I am finally healthy, I will likely fail in clinging to Him every single day. I pray often that He will keep my eyes focused on Him at all times, instead of only when life gets to be "too much"! I also pray that if I am able to become a "healthy person" that I do not take a single day of that for granted, but I suspect I will. God is training me for many things right now and I think one of the big lessons I am to learn is that I must cling to Him not just every day, but every moment of every day. I pray that I learn how to do that consistently.

I pray that we all learn to not just thank God for the good things, or run to God when the bad things appear, but that we continually seek God's presence in our lives every moment. I pray that even when we fail, as all humans do, that we pick ourselves back up and remember it is by His grace that we are saved, not by our own works! How very thankful I am for that because if I had to count on my "works" for my salvation I'm afraid I would come up quite short!!! So, thank you God for being with me and showing me how to view a swollen spleen and fevers as progress. Thank you for allowing me to see my own faults and flaws and to know that you love me in spite of all of them (and there are quite a lot I must say)! I want to praise You in every thing I do and I know that I will fall short, but I pray You will show me where and when I fail. That with every failure You will teach me even more how to shine Your light and love on every one I encounter. I pray that You will guide me and show me the way to live my life following the path You have set before me. I am weak right now, and I may have a long road ahead of me before I "get well", but I am so thankful for the strength You give me that allows me to keep on going. Without You, without Your love, without Your guidance, without Your continual forgiveness of my many sins, I would be nothing. I want to be well, I long to be healthy, but You are teaching me to long even more for YOUR will and not my own and I am thankful for that as well.

I pray you all have had a blessed Valentine's Day. I know many people who get depressed around this "holiday" because they don't have a "special someone". I remember feeling the same way if I did not have a boyfriend to celebrate this day with. However, with my precious M having to be away from me this Valentine's Day, I feel God has shown me that I spent my day with a very "special someone" - I spent it with HIM! His love is never ending and all consuming and I have come to learn how to love Him with a passion in my heart that I never had before. I guess we should all realize that everyone's true Valentine is God Himself.

"May the Lord make your love increase and overflow for each other and for everyone else."
1 Thessalonians 3:12 (NIV)

Happy Valentine's Day to you all! Much love!
K

His "good" can be found in every "bad"...

It's a long one, but when have I ever posted a "short one"!!! The past few days have been difficult. The reprieve I had from the noise sensitivity has gone and so I find myself, once again, having to wear headphones and ear plugs. In morning treatment it isn’t so bad because everyone else sleeps. In fact, most everyone should sleep when they’ve been given 50-100 mgs of IV Benadryl. However, I’ve never been like everyone else when it comes to medication. I have yet to sleep in treatment after almost 8 months here. So, the mornings are quiet and I can take my headphones off and that is a blessing. No matter how expensive or “comfortable” headphones may be, they were not meant to be worn for 6 hours a day. They give me headaches from the pressure they put on my head and face. It seems to be a situation of either having headaches from the headphones or headaches from the noise and neither is good. I have been blessed that the light sensitivity is not as bad as it once was. However, it too is coming back slowly.

This is what I referred to in my last post. This is a “herx” and I do hate it. The Babesia that we are targeting with the new IV antibiotic as well as with an oral “anti-malarial” drug is what causes most of these symptoms. It’s the one I talked about that tears my red blood cells causing me to not get enough oxygen to my brain. It’s the one that leads to seizures due to that lack of oxygen. The past few afternoon treatments I felt that scary “pre-seizure” feeling. I came home with migraine headaches and cried when I would have to go lay in my bedroom in the dark with a fan on loud enough to drown out even the smallest noises. I have not had a seizure, thank you GOD, but the precursors seem to be coming back. This is when the headphones, earplugs, etc. just cannot do enough. I had also been having a fever of around 100 each night by the time I left treatment. Having a 100 degree fever is not even considered a fever by most doctors’ standards, but when your normal body temp is right below 97 degrees, a 100 degrees feels like a fever of 101 or 102. I have found that by afternoon treatment my body has started hurting again. The bone and joint pain are bad but this time my spine hurts and that comes from the Bartonella I believe. I have “doctored” my treatment chairs with so much memory foam and yet I cannot get anywhere near comfortable.

The biggest issue for me is that by the afternoon session my brain is low on oxygen yet again. I have realized by now that I cannot talk during afternoon treatment or the headaches get worse. For those who know me, well, the idea of me not talking for 2+ hours is laughable. I started talking at an early age and if you ask my parents they might tell you I haven’t shut up since…haha. It’s true to an extent though. Even through this blog one can tell that if I type this much, well who knows how much I might actually say if I had someone sitting in front of me! So, again I have to find a “new normal” in this fight. This new normal would include me trying new things to keep my extremely talkative self from talking at all for those 2+ hours which will be so hard on me. My plan for now is to take my portable DVD player and plug in the “ear buds” and cover those with the headphones and just focus on some light and easy movie since my light sensitivity is not as bad as it once was. I don’t know if this plan will work but I’ve tried reading and on the medication I just lose focus and can’t comprehend as well. Plus, reading sometimes gives normal people headaches. I’ve been knitting some to try and focus on something else, but no one was surprised to find I could easily knit and talk at the same time haha. So, today I go with my “plan B” of watching a movie. We’ll see how it works out.

The good news is that I have had a 3 week rest from the seizures. This has allowed my body’s levels of carbon dioxide to come back to more normal levels. When I had 4 seizures in 8 days my levels were dropping and now they are back to a more normal level. My red blood cell count is low again but this is due to the Babesia tearing the red blood cells. It causes my over all blood levels to drop a bit, but thankfully not too low. God gave me time to allow my body to heal some from the horrible seizures that lasted for so long and were coming so frequently. Now I feel He is telling me to literally BE QUIET. Sometimes I think I talk so much, think so much, that I have a hard time hearing Him. I hear Him now though and He is telling me to hush, to rest my body, to try and conserve my oxygen so that I don’t have a seizure. I’m listening and trying my best to follow His instructions.

I did find that the fevers I have been having are due to an infection in my nose and throat. The doctor has prescribed a nasal spray that actually puts the antibiotic into your nostrils and sinus cavities. We hope that by starting this after treatment today I will fight off this infection and not have to deal with the aches and headaches that often accompany fevers. But guess what? I am thankful to actually have a fever. I know that sounds ridiculous, but fevers mean my immune system is actually trying to work WITH me. For 20+ years I have had all sorts of viral and bacterial infections and never run a fever. When I was in grade school my mom would have to force the pediatrician to run a strep test because she knew that’s what I had, but the doctor never thought I could have strep without a fever. Every time they ran the test he would have to see that I did have strep with absolutely NO fever. Fevers mean your white blood cells are trying to fight something. It’s like the alarm sounding in a firehouse and once those white blood cells hear the “alarm” of an infection they swarm out and it results in a fever. This is one of the many things I am referring to when I say His good can be found in every bad. God is good. God is slowly healing my overworked immune system and my lab results are showing improvement. It may take 6 months or so to rid myself of the Babesia but God’s plan for me is perfect, no matter if it includes fevers and seizures. He is with me in all ways, on all days and I am forever grateful to feel Him even when I might not think I’m “hearing” Him.

Some people may read this and say that it’s the medication working, that this is simply science, but that is just not true. My doctor even seems to me to be a bit stumped as to how much my labs have improved and I often feel it’s because the reason for why they are improving is not clear, scientifically speaking. I know why they are improving though. It’s because of God pure & simple. I know after much prayer He divinely led me to this doctor, to this clinic, and after much questioning and debate, my husband and I realized we had to follow where God seemed to be leading us. It has been a long and sometimes extremely hard road, but we knew and we still know that God led us here. It is HIM who will receive all the glory for my healing and improvement. I’m not saying medicine is not at all why I’m getting better, I am saying that God is using my doctor as His tool, that my doctor is not the healer but is His instrument for my healing. I know so much about medicine after the years of bad health I have endured that sometimes I think I should have an “honorary M.D.” so I know what kills infections, what blood tests show, what can be expected from each infection I encounter. However, I know without God I would never have made it through the past 7 and a half months, mentally or physically. God has chosen to put me “in the fire” so He can mold me into the person He has planned for me to become. I have no idea where all of this, these illnesses, this time away from my family and friends, this difficult road is leading me. I only know that I am praying that I am following HIS will and that the pathways I walk are ones He has ordained for me to walk on this earth. I have no doubt that He is my Great Physician, my true Healer, and definitely my Comforter. I want to get well, I want to be healthy, but more than any of that, I truly want to become the person God wants me to be.

So there you have it. I had been scared the last couple of days about “what ifs”. As in, “what if the seizures come back?” or, “what if I cannot get rid of the Babesia and have to endure months of seizures?” and those are understandable questions. I wouldn’t be human if I didn’t worry or question these things at times. Yet again, God made something clear to me yesterday. Before I met with the doctor He made me realize that stress is a big trigger for my seizures. Guess what asking all of those “what if’s” does? It stresses me out. I could stress myself into a seizure if I focused on all of the “what if’s” and I would only have myself to blame for that. Again, He made me see that He brought me through all of the seizures that came before and that He would be with me if they start again. There is nothing to be gained by worrying. I had to focus hard on the fact that God did NOT give us a spirit of fear! But oh how Satan can get in your head and make you doubt and question and scare yourself to death! I refuse to allow that to happen and I can do that only by relying solely on God and His love and protection. He has gotten me this far and if I put my full faith and trust in Him, He will continue to carry me through the rest of this journey.

This has been a long one. Sorry for always writing so much, but now you can truly see how I might just talk myself into an oxygen deprived state, huh? Haha. Just a bit more and I will be done! I pray that all of you are doing well. I pray that you all refuse to go out into the world every day with a “spirit of fear” – no matter what your fear is, God is greater than that fear. He only wants you to “cast all of your cares on Him”, follow where He leads you and He will work the rest out for you. Faith is not just believing in God – faith is “stepping out of the boat” just like Peter did when he asked Jesus if he could walk out onto the water. The moment Peter started to focus on the fear, the moment he took his eyes off of Jesus, that’s when he started to sink. That is still true with us in this day and age every single day. I have to constantly remind myself that I am not in control of any of this. I am simply meant to pray, and to pray hard, for God to make His will for that day, or sometimes just that moment, clear to me. I pray to Him to keep my eyes focused on Him, on His ways, on what He has already done in me and for me. I bet if you look around, no matter how bad your current situation is, you could find things to be thankful for. We all take so much for granted. I know I did and most days I still do. But I keep praying to see my blessings instead of focusing on what I perceive to be “the bad stuff” because He uses all those bad things, those bad times, for our good if we allow Him to. It’s about trust and faith. Those are hard things because we can only see with our “human eyes” and have no idea what God sees for us. Just pray every day that God will show you what to be thankful for, what blessings you do have in spite of what troubles may be in your life. It’s a choice and I have to choose every day to believe that God’s plan for me is a good plan, even if it includes some seizures. He is in control of all of it. I just have to thank Him for always being with me and oh, how thankful I am for that!

How odd is it that I just flipped my daily calendar to February 4th and found the following verse:
"The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid?" Psalm 27:1 (NRSV)

No coincidences there, none at all! Much love to you all!
K