Yes, I'm still here :)

It’s been a long time since I posted an update on here. I battle the fatigue that comes along with taking the IV Rifampin and I also have to battle the oddest side effect which is feeling emotionally numb. I’m not depressed but I’m not happy either. I feel like my emotions have been muted and that’s so strange for me. It’s also a big reason I haven’t written on here in so long. It’s hard for me to write when I don’t feel an urge to write. It’s also hard to know what to write because I struggle with how to explain things and then I just get frustrated and give up. BUT I know there are some very loyal family and friends who keep up with me by reading this and I wanted to report that I am indeed still here and still fighting!

The main change since last time has been adding our second change in the lineup – IV Azithromycin. Taking two or three different kinds of antibiotics is important when you are fighting so many different bacterial infections. Lyme Disease is only a small part of what I’m battling. It’s actually “co-infections” of Lyme that really knocked me down and caused me to get so terribly sick – in my situation it’s the Bartonella and Babesia (or Babesiosis) that keep me down. The Rifampin is a great drug to hit the Bartonella infection and I can tell there have been a lot of improvements. However, treating the Babesia is trickier since it is actually a parasite that lives on red blood cells. The main course of treatment for Babesia is taking Azithromycin AND a type of anti-protozoa medication, Mepron. A protozoa is a single celled organism and, as I said, Babesia is a parasite so I normally refer to the medication for it as “anti-parasitic”. I’ve tried to take Mepron many times – starting a year and a half ago when I was in Kansas City. My body reacts pretty violently to it. The usual dose is 1 tsp. twice daily but that was more than I could handle and my seizures increased. The weird thing is that I probably had more seizures because the Mepron was actually working and ended up killing off too many red blood cells at a time depriving me of enough oxygen to get to my brain (red blood cells carry oxygen). We kept having to taper the dosage down until eventually I was down to taking a half tsp. on Monday morning and then another half tsp. on Tuesday night and that was it for the week. I still had trouble with that so we ended up stopping the drug. I tried it again this January and thought, “I’m a lot better than I was this time last year so I’ll try to take the normal dosage.” BIG MISTAKE! I took it for 4 days before M made me stop because I was reacting so horribly to it. The weird thing is that I don’t remember anything from the 4 days I was on it. Again, likely due to killing off more red blood cells than I could handle.

So, for the past 5 months or so I’ve only been taking an herbal supplement that helps rid the body of several types of parasites. This supplement helps keep my Babesia symptoms at bay somewhat, but it’s not killing the Babesia off like I need. We’re meeting with the doctor again in a week or two and will discuss the idea of easing my body into a Mepron dose at a VERY slow rate. Like putting a few drops of Mepron in a glass of water and after a week adding another drop or two. Basically I want to keep from killing off those red blood cells so fast but I also want to make sure I’m getting rid of Babesia instead of just masking the symptoms with a supplement. Taking the IV Azithromycin has been hard on me as well. Halfway through the bag I start to feel extremely nauseous and it is a miserable feeling. Oddly enough it helps if I eat a pickle or two around that time because the vinegar taste overrides the sick feeling somehow. I don’t understand it, but I do appreciate it. But with the addition of the Azithromycin my treatment schedule is now more time consuming. I start the Azithromycin drip around 9:00 and it goes for at least an hour and a half to two hours. Then I take a break until 2:00 which is when I run a small bag of just IV fluids which takes an hour. Immediately after that I start my Rifampin bag which takes between 2 and 3 hours to finish. If I feel good I can get the drugs in a little faster, but when I start to feel sick, achy, or just miserable I have to slow them down to help keep the side effects at bay somewhat. So I’m tied to this IV pole for up to 6 hours a day and no less than 5 hours. It’s hard on my body to lie around in bed for that long even though I don’t actually feel like getting up to do anything. My body just aches a lot – especially my back and neck.

NOW for some good news. I have gotten out of the house a few times for something other than doctor's visits – YAY ME!!! Once was a small trip to an outdoor shopping area and I went in a couple of stores and handled it without earplugs. Then I’ve made 2 trips to the grocery store and didn’t need earplugs either time – HUGE PROGRESS!!!! Those outings have occurred over the span of 5 weeks or so because there are still days that just standing upright will wear me out – but to have some really good days makes the really bad ones easier to bear. Of course I’m still not able to drive myself anywhere and I don’t do well out of the house for more than an hour and a half, but ANYTIME I can actually get out of the house is just such a blessing to me! So, we pray that these good days come more frequently because I do feel they are God’s way of showing me light at the end of this very dark tunnel.

The last thing I’ll write about is not about my difficulty taking the medications, rather it's my difficulty in handing over all of my worries to God every single day. It’s almost ingrained in human nature for us to want to take credit for the good things that happen in our lives and then blame God (or someone or something else) for any of the bad things. With my emotions being so dulled I was having a really hard time sensing God around me and I was angry about where I am with treatment. This Friday will be my 36th birthday and I had started doing something we probably all do around our birthdays – I started to think about where my life is versus where I thought it would be by the time I was 36. Trust me when I say I NEVER imagined I would be acting more like an 86 year old than a 36 year old! I always thought I would have at least one child by now, maybe two, and that I would be a busy mom and wife. It’s hard to fathom just how far away my reality is from that dream. June will mark 2 years of IV daily IV treatments and I can’t believe it’s been that long! I mean, on one hand I KNOW it’s been a long time, but on the other, well, I am so cooped up in my bedroom that I don’t really notice how fast the days turn into weeks and months and years!

So, I was thinking on where I wanted to be by now and then I got really angry with where I am. I once again made the stupid mistake of thinking I should get mad at God for letting me go through all of this. It took a couple of weeks and a couple of good online sermons to make me see how much I’m taking for granted. While two years is a long time, I can also see just how many improvements I’ve made during that time. My thinking is clearer, my body is stronger (or rather I can walk better and my hand strength is back), my heart rate doesn’t jump into the 180s when I walk to my kitchen, I’m not having as many seizures or tremors even, I’m getting better at handling day to day changes, etc. I prayed for God to make me healthier and He is doing just that. God has been the one directing my treatment plans by planting seeds of ideas in my head to talk to the doctor about trying. He has blessed me with a doctor who is willing to work with a patient who wants to be so very “hands-on” when it comes to planning out treatment protocols. He has given me a husband who wears himself out doing all he can to take care of me physically, emotionally, and spiritually and who runs his own business all at the same time. He has blessed me with parents who give everything to help us. My mom has been coming four days a week to help take care of me and on the days when I don’t need her sitting right with me she’s busy trying to do laundry, clean our kitchen, and make meals so that my sweet husband can set up more meetings outside of the house without worrying about me being home alone. My dad has not just given up having his wife around but he’s the one who’s there if my sister needs him to pick up her girls at school while she has to work. He also handles a lot of the things that mom would be doing if she were able to be at her house more! And my wonderful sister came to visit me this weekend and she lifted my spirits by just being here. Even though she only lives 20 minutes away, I haven’t really been up for visitors so it had been maybe 5 months since I had gotten to hug her and spend some one on one time with her. It was wonderful medicine for me.

So, no, things are not wonderful. My life is not where I thought it would be by the time I was 36. I have a long way to go to get a life closer to “normal” and I get frustrated by all of that. However, I felt strongly that God is telling me that while I'm not getting to live a "normal life" or a mediocre life even, I also will not have a "normal" or mediocre relationship with Him. And when I think about it that way - when I see the vast difference in my relationship with God over the past 2 years, I feel stupid for overlooking such a gift. I do serve a great God who is faithful and who has never, and will never, leave my side. I may not feel Him as strongly sometimes, but I know He’s still there and He’s still working miracles in my life. For now, those trips out of the house are my miracles and He has plenty more in store for my life I feel certain. Basically, I will stop trying to beat myself up with what I don’t have at this stage in my life and I will try to remind myself daily of all the blessings God has given me – one of which is HUGE and that is all the wonderful people that keep on praying for me! Those prayers are heard and I can feel them so I appreciate all of you going through the past 23 months with me via this blog. It’s an easier road to travel if you have friends and family traveling it with you.

“Bless the Lord, O my soul, and do not forget all his benefits – who forgives all your iniquity, who heals all your diseases.” Psalm 103:2-3 (NRSV)

Much love-
K