To be perfectly honest...

I need to come clean. Often times, when I write these entries, I write because God is giving me a message or teaching me a lesson that I feel He wants me to share. That’s not the part I need to come clean about though. When I follow God’s direction I find myself feeling more upbeat and positive about the things I’m going through. I realized that if someone reads this they might think I have the best attitude about my situation, or a sunny outlook on the frustration and disappointment I so often feel. Now I believe that God has having me write this entry and not spare any of the details. So, I’m going to take you where I find myself so often, in a pity party feeling confused, hurt, angry, and hurt. Don’t worry though, God won’t let me finish without writing about what He is doing to change all of those feelings that weigh down my heart.

When I started to feel better taking the IV antibiotic Gentamicin, I rejoiced! I wrote about all my improvements and I know many of you rejoiced with me. Then my kidneys stopped filtering the medication well. I had only been on it for close to 3 months but I was seeing so much improvement that having to stop it broke my heart. I’m just now realizing that it broke so much more than that. The longer I was off the medication the more I seemed to slide backwards with old symptoms flaring up again. This broke my belief that I was nearing the end of this painfully difficult time in my life. Instead of the hope I had been feeling, I started to believe that I would never feel any better or make any more progress. I resigned myself to accepting what seemed to be fact – that I would never be able to lead a “normal” life. I stopped asking for big improvements and instead asked God to just heal me to the point where I could do household chores, cook for my husband, etc. Basically, I told Him that I didn’t have to be able to leave the house and deal with the noise of the outside world. I told Him I was letting go of the dream of having the life I really wanted. I even began to give up the idea that I would be blessed with a child and get to experience motherhood. I started trying to focus on the positives of not being a parent. You know - how everyone says they would travel more if they didn’t have children, or take a job they loved instead of one that paid the bills because, well, we all know it’s expensive to have kids! I was trying to give up all my dreams thinking that they just weren’t in God’s plan for me and that I needed to accept and appreciate what I was given instead of focusing on what I couldn’t have. I stopped believing that God had great plans in store for my life. I began to think He just had some sort of “good enough” plans. In short, I had gotten mad, then felt hurt and broken hearted, and finally I started trying to be in an “acceptance” phase.

There’s a part of that logic that is rational. If I focused solely on what I wanted out of life, or where I thought my life would be by the time I was 35, then I would be horribly depressed right now. It was depressing enough when I tried to ask God to take away my desires and show me how to be thankful for the life I had. In fact, when I asked God to do that I didn’t feel any weight lift off of me like I normally do when I try and hand something over to God. That’s when I got really frustrated and angry with God. I questioned why He would give me such desires in my heart if He was not going to bless me with them. I started letting God know how upset I was and then some days I just didn’t talk to Him at all. All of this just made me feel horrible.

You see, I thought it was God who was directing me to what IV antibiotics I should try. First I tried Doxycycline but the side effects were horrible. Did you know that heavy doses of antibiotics can cause mood swings? I didn’t know that until I started to go through all of this. So, we stopped the Doxy. Next was the one I wrote about last – Rifampin. It’s a very strong drug, as I have written before, and mainly used to treat tuberculosis and some types of meningitis. I started it and all seemed well until day 3 when my mood changed dramatically. I felt so despondent. I would lie in my bed and just cry uncontrollably. I had no idea why I was feeling so depressed. I couldn’t find the good in anything. I decided to call a friend from treatment in Kansas City who had been on Rifampin before. I wanted to know if the depression was a side effect, or if it was truly what I was feeling, or if it was part of a Herxheimer reaction – where symptoms will come up because of an overload of toxins in your body. When I told her how I had been sobbing crying she immediately said, “That’s the Rifampin.” So, on day 5 we stopped the Rifampin and within a 24 hour period there was a change in my attitude. After 48 hours I was beginning to feel more like myself. After 4 days off the drug I knew for certain that it was the culprit behind the emotional change and I knew that I would not be able to take that drug.

I realized there weren’t many other IV antibiotics that would be helpful for me. I’ve been on 6 so far and 3 of those I wasn’t able to take due to side effects or allergies. I already know I have drug allergies that keep me from trying many of the other antibiotics, so I started feeling helpless again. I felt awful – both physically and mentally. Spiritually speaking I was at a low point too. I felt like I had been following where God was leading me regarding the medication changes and when they didn’t work I felt let down. To top it all off, my sweet husband has to have shoulder surgery on Thursday. He injured it 4-5 years ago and kept being told to do physical therapy for years – which he did but got no relief from the pain. We finally just asked our doctor, the same one who treats my Lyme, to order an MRI for M’s shoulder. It showed a torn muscle around his rotator cuff along with a cyst and bones spurs that need to be removed. So, I’ve been having to see my constantly loving caretaker in constant, miserable pain and I felt more angry at God. We all know the saying that God will never give you more than you can handle. Well, I have heard people add “I wish He didn’t trust me so much!” after that comment as a joke. I truly felt that way though. I was mad that God would add yet another hurdle for us to jump over. Sometimes I forget that we don’t have to jump those hurdles on our own power – that makes them almost impossible to get over. When we allow God to work in our lives He will carry us over those hurdles. It doesn’t make the hurdles go away nor does it make you feel that there are no hurdles in your life, but it does get you over them – even the highest one. I guess by now you can see that God has been working on me again.

When the Gentamicin started to affect my kidney function I started to take myself off as many of my other medications as I could to ease the burden of my kidneys having to filter so much. This weekend God put something in front of me. It was a bag that held my anti-parasitic medication. I had taken it to my doctor’s office to show him, since I had gotten it from my Kansas City doctor I wanted him to see what it was. We came home that day knowing that I couldn’t take the Gentamicin and I sat the bag down in another room. So, this weekend I was in there and saw the bag and thought, “Hmmm. I wonder if I should get back on this since I’m off the Gentamicin now?” I decided to try it. Within 2 days I was feeling stronger and better. The anti-parasitic medication hits the Babesia. I have Lyme, Bartonella and Babesia. The first two have to be treated with antibiotics but Babesia is actually treated like a parasite with drugs and supplements that are normally used to treat malaria. But, I don’t just credit those anti-parasitic medications for how much better I feel. I credit God because I cried out to Him. I was already down because of how I felt physically, but on the Rifampin I cried out to Him like never before. I cried for Him to carry me, to heal me, to get me through all of this. God is good and He sure did answer.

His answer started to form in my brain. I knew God was pushing me to try and get out in the world again. I felt a tug to get out because I felt God was going to show me what He was doing for me. So, yesterday I decided to have mom take me to the photo shop to print out my Christmas pictures. I had my earplugs, headphones, and seizure meds in a small bag with me in case I needed them, but I was going to try and brave it without them. We went into the photo shop and I was able to download my picture on their computer and fill out the order form. We were told they would be ready in about 3 hours. I didn’t want to go home though, I wanted to see what God was doing for me physically. I had a pair of jeans that I needed to return, so we went to the store and I exchanged them. Then I decided to really push it and go out for lunch. Now this is huge because I haven’t been in a restaurant since March of 2009. Most people don’t notice just how noisy restaurants are – people talking, forks and knives scraping plates, chairs being pushed away from tables, music playing, etc. But we went. It was loud so I put my earplugs in. That made it sound like it would to someone without supersonic hearing – haha. It was a lot of visual “hustle and bustle” too. I have a hard time with a lot of motion around me but I was handling this very well. Mom and I ate and I was absolutely giddy about being there. We left and I took a Valium to calm my brain from all the commotion. Then mom went in the photo shop to pick up my pictures because I knew I had reached my limit for sound sensitivity. I came home and was so happy but so exhausted! Mom helped me get back into my pajamas and into the bed. I hooked up a bag of IV fluids and promptly fell asleep. I was so tired that my husband had to physically shake me awake! I’m a little tired today, but not as much as I have been in the past after short excursions.

You have heard people say, “God is good all the time. All the time God is good.” Honestly, it is true. But, you have to seek God and when you do so, you also have to be silent so you can hear or feel what He is trying to teach you. I had been trying to drown Him out by watching mindless television shows all day or playing on the computer – basically anything that would keep me from communing with God. But, finally I turned everything off and tuned in more to Him. Through my experience yesterday I learned that He is asking that I trust Him more, and give Him credit for the medicine instead of just crediting the medicine itself. I learned that His plan for my life requires that I break myself free from the depression and heartache that the devil loves to use in our lives. I learned I have to tell myself repeatedly that God IS good ALL the time – ALL the time God IS good! I learned that I will always be working on trusting Him and living by faith. We all have to work on our faith constantly because we are human and will fail so often. We must step out in faith more often so our trust and belief can grow even stronger. We do this and through it we begin to have a more mature relationship with God. I’m working on how to literally “live by faith”. I have no idea what God has in store for me, but He has taught me over the past month or so to stop selling Him short! I was putting a limit on what God would do in my life. I wasn’t praying for BIG things because I didn’t believe I would get them. I may not get everything I had in mind for my life, BUT God may have all of those things, and maybe more, in store for me. I have to learn to trust in Him more and more because right when I think my prayers have gone unanswered, He shows me how much more He can do for me – much more than I even prayed for.

I got OUT and I was able to do something I haven’t done in almost 2 years! I ate at a restaurant and I can’t tell you how great that feels. God is working, even when I’m in doubt, or mad, or frustrated – He knows how I feel and He is working. I just have to step out in faith. I was hesitant about getting out – but He pushed me. I was concerned about how loud the restaurant would be – but again I felt Him pushing and I went! I serve a wonderfully loving and amazingly strong God and I am thankful for ALL that He does for me.

Personal sidenote for those of you who know me well and get my Christmas cards every year: The picture on the card of me, M and my little baby dog, well, it came across as a big lie to me. Why? Well, because it took me three days to get ready for it. Taking a shower, painting my nails, fixing my hair, putting on full makeup – even lipstick and having nice clothes on for the first time in 6 weeks or so – well, it sure isn’t our regular day life!! We sat on our deck and used a tripod and self timer to take the pictures and took about 15 before I was ready to collapse – and we all know I don’t go outside often! In the picture I am doing what I instinctually do when a camera is around – SMILING BIG! When I looked at the picture on my computer I laughed so because I look so healthy and happy with my life. The reason that is so comical to me is because right after it was taken I came inside and just laid on the living room floor. M had to take my cardigan off me and my shoes. I looked at him from the floor and said, “This should be my Christmas photo – it’s a ‘true life’ shot!” Now I think perhaps that picture isn’t a “lie” – it may be a picture of what God has in store for me– good health and much happiness!

“I cry aloud to the Lord, and he answers from his holy hill.”
Psalm 3:4 (NRSV)

“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NRSV)

“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” 1 Corinthians 2:9 (NIV)

Much love-
K