The truth of the matter...

I know I have been slow in posting on here lately. Really I think I've been slow in just about everything. I decided to wait until next week to start the Babesia treatment because my body is a little pushed right now. I had blood drawn today and hope to find out that I have finally kicked Influenza A's butt after 3 months of it being active & 3 months of expensive flu medication!!! However, my next appt. with the IV doc isn't until Saturday of next week.

I have come to realize that I have no clue what "good" feels like. The nurses will ask me if I am feeling better & I think, "Well, the Heparin has helped me greatly in my ability to talk and get blood/oxygen to my brain, but really that's the only change for now." Then I hear myself say, "I'm doing okay." But yesterday I finally had to admit that I am NOT doing okay. My cardiac issues are coming back for some reason. Heparin (the blood thinner/anti-coagulant) had helped a lot and I hadn't been noticing my heart beating as hard or fast. I was able to stand up for longer periods of time without my blood pressue bottoming out & fainting. I was feeling almost normal as far as my heart was concerned. Then things started to change & I really didn't want to acknowledge the change. Well, that and honestly, I've been living with cardiac issues for so long that when they do "reappear" or get worse, I don't notice it as much (or maybe I should say as quickly) as someone who had never had heart problems might.

The PICC line I have in my arm is threaded up my vein and ends at the top of my heart. Over the past 2-3 weeks I've noticed that when my IV drip is slowed down or if it is made to drip at a faster rate, my heart hurts. I feel the beat change and I have had a lot more "skipped beats" where it feels like my heart stops for a few seconds and then it beats hard & fast to catch back up into a rhythm. I had wondered why some days it seemed like my veins were just sucking up the IV antibiotics really fast even though they were dripping slow. Turns out that was when my heart would jump/race/beat fast and it caused the pace of the fluids coming in to change.

Honestly, I hate this more than anything because my heart issues are really the scariest of my Lyme symptoms. My doctor knows this and that's why everyone else in the clinic who is on IV Doxycycline is able to be on a 1.5 hour bag while I have to be on a 2 hour bag. I'm not getting more of the antibiotic, I'm being given it at a slower rate due to my heart problems. I may have explained this but the Babesia can cause "air hunger" or the feeling that something is constricting your chest or sitting on it. If any of you have had a bad case of pneumonia or bronchitis you might know what I mean by that description. However, I finally had to admit that my heart was back to its former ways - it races when I stand, walk, and sadly when I talk or laugh. I took my pulse meter with me to treatment to make sure the numbers were what I thought they were. Sure enough walking to my treatment chair got my heart up to 136 beats per minute. If I leaned back in my chair and was quiet it would go back to around 90. If I tried to talk or giggle it would shoot back up into the 120s - 130s. So I wrote a note to the doctor today to let them know what was going on.

I feel like I try to focus on the positive changes that have taken place and ignore the pesky troublesome symptoms that creep up or haven't left at all yet. But when I came home from treatment my heart actually hurt and I was exhausted. Whenever my heart rate fluctuates a lot (sometimes in the 40s/50s then going into the 140s or so) it makes my body feel like I have been in a relay race - running really fast until I pass the baton to someone else & stop running. I am hoping to hear from the doctor tomorrow about what we could do to help with these symptoms. But I had the hardest time admitting that they were back. If you want to know why it's because I want so much to get better - even if it takes longer than I anticipated - I want to write about every small improvement. I feel like I have this HUGE cheering section of family and friends (and friends of friends & sometimes people I don't even know) and they (or you as you're the one reading this) have been praying so hard for me that I hate to say, "Well guys, here's another set back." That's so terribly stupid, but the human brain isn't very rational - or at least mine isn't.

I don't pray to regain my health anymore. That might sound odd, but I really try to pray for God's will. His will may very well be for me to finally know what it feels like to live the life of a healthy person, but as I give more and more of myself to Him I also must acknowledge that I don't know what His plans are for me. I trust only in the fact that God is good and He is working in me for some reason with some plan that I don't have to fully understand to participate in. I want to make sure that I am obedient to His will and that I praise Him and spread His word and love to others. I feel like He sent me here to get treatment but I've felt that this has always been more about reaching others and hopefully bringing them closer to God than it has been about my own personal health. Maybe that makes sense to you, maybe it doesn't. I'll say it this way: I WANT to get better and go home and be able to be a healthy wife and hopefully one day a healthy mother. I WANT this to happen as quickly as possible. I WANT all of this to have a fairy tale type of happy ending. But I am learning that I don't live for what I WANT - I am trying to live for what GOD WANTS. His plan may very well be that I get all of those things that I want, but I pray simply that HIS WILL be done instead of praying for MY WANTS. He already knows my heart's desires, I don't need to list them off as though making a list for Santa Claus. I think that might be the best way to describe how I pray now - just for His will to be done.

The other day I was reading I & II Corinthians and so much of what Paul writes in those books seems to jump off the page and into my soul:

Like in I Corinthians 2:9 Paul writes (he is speaking of verses from Isaiah here), "However, it is written: 'No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him'."

Later, in II Corinthians 4:7-10 Paul writes, "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body."

Then I read on in II Corinthians 12:7-10 and am always amazed by what Paul says here, "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, as messenger of Satan, to torment me. Three times I pleaded with the Lord to take it 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."

People sometimes write me emails or send me cards saying they are amazed by how I am handling all of this. I almost laugh because it is so obvious to me that I am not the one handling it AT ALL! If I were handling this, I would have already turned tail and run!!! Any strength you see in me is only from God, any grace you see through me is only from God. I personally possess nothing that makes me particularly well equipped to deal with all of this. I am weak and I still pitch fits and I groan to God often. Anything that makes you think I'm dealing with all of this amazing well is not from me at all - it is ONLY from God. I wish I had the strength of Paul - I aspire to have that strong of a faith one day, but for now there's still part of me that wants to beg God to remove this "thorn from my flesh". God is also the reason I keep going when I sometimes cry to stop, He is why I push my body further than I want to push. He is every good thing you might think you see in me. I am still learning and I have so much left to learn. What I have learned to be so very true is that God will give you enough of whatever you need to get through that day if you pray for His help. I have learned that I cannot worry about tomorrow because it won't do me any good. I've always been a "worrier" but I am trying to hand that over to God too. He is showing me that by the end of each day I may feel crushed, beaten down, exhausted, and drained physically, mentally and emotionally but He continues to give me the strength to get up the next morning and the desire to go and fight the battle again.

So, the truth of the matter is this - I'm a "people pleaser" by nature so I want to only tell you all when the good news comes. I want you to feel encouraged and I want you to read these entries and feel uplifted. I am learning though that I need to tell you all when the bad news comes too. Yesterday I came home to the apartment after treatments and I cried to my mom. I cried because my body is so tired that I couldn't imagine doing one more day of treatments. I cried because I've been here for a little over 3 months and I haven't seen the HUGE STRIDES of progress that I wanted to see by this point. I cried because I had to admit that my heart is acting up again and I wonder really how much more it can take. I cried because I'm human and I'm mad, sad, frustrated, confused, and angry. God knows all of that. He knows I can only take so much. He doesn't expect me to be perfect - thank you, Lord for that because I would fail miserably. I really cried because I allowed myself to think ahead - to the near future. I allowed myself to worry about how long this is really going to take. I allowed myself to worry that 30 years of multiple illnesses which have become chronic infections that are doing some sort of damage to basically every organ system I have may be too far gone to fix. I allowed myself to worry that my body might not be strong enough to fight this battle. I told my mom my scary thought - the one I've been having to face over these past few years - that my own body is fighting AGAINST me. My immune system is shot and confused and it's not fighting the illnesses, it's fighting the medications that are trying to kill off the infections. I allowed myself to say that there may come a time when I decide that this treatment regimen is too tough on my body and that maybe I did not get here in the "nick of time" to regain my health. But those thoughts, my friends, are not from God. Those dark, scary, worrisome thoughts are all about the future and I don't need to worry about the future because God has a plan for me. It doesn't matter that I don't know what it is. I cling to that scripture Paul quoted from Isaiah - I have no idea what God has in store for me. I only know I need to lean more on Him. Then when those dark, scary, worrisome thoughts try to creep into my brain, I need to recognize where they are coming from and hand them right over to God.

It's so hard - all of this is so hard. Treatments are hard both physically and mentally, being away from my husband for weeks at a time is hard, not making huge strides of progress is hard, knowing that I don't have a clue as to what my future holds is hard on me - I'm a planner and I like knowing what's in store. It's all so very hard, but God knows this and He is with me. Some days He feels further away than others, but I know He is always there. He is trying to turn me into the person He wants me to become and that in itself can be a painful process - even without the illnesses. So, the truth of the matter is I am a weak woman with a strong God who is carrying me through this while I weep and cry out to Him.

He wants me to show my weak side. He wants me to let you all know that without Him, I would be utterly and completely lost and without hope. Hope lies in Him and Him alone. My hope rests in His promises and while I may have some really rough days, I never prayed, "Dear God, please grant me health without making me go through some hard days and make it super fast." I prayed simply, "God, I am so sick. Please lead me to where I need to be to get help." That prayer was answered.

Now I am off to bed and I will get to see my sweet M tomorrow and hug his neck and smile with him. I will wake up tomorrow and God will grant me the strength to go on to treatment again because that seems to be where God wants me right now.

Much love to you all!
K