Tired times...

I have wanted to write an update for weeks but I just can't think straight and I'm exhausted. After posting my last entry, which was a very heartfelt prayer to God, He answered within a few days. I can't really explain how He does things in my life, I just know when He is leading me somewhere. He led me to try the IV Rifampin again that Monday. I had really been praying to be able to stop the IV medication and get my PICC line pulled, but He wasn't leading me in the direction I WANTED to go in, but in the direction I NEEDED to go in. So, with a lot of "tweaks" to how I take the Rifampin, I've been able to handle it this time around. I do 500 mL of IV fluids before I start the Rifampin bag which is 300 mgs diluted in 1,000 mL of fluid. Then halfway through the Rifampin bag I stop it and take a break for at least 30 minutes and I run the bag slowly over 3 hours (not counting the break). This is the only way I can handle the drug. When I tried to go without the IV fluids beforehand and not stop the Rifampin for a break halfway through, bad things happened. I had seizure like episodes but would also scream and cry and generally look like a person possessed. All in all, it's just been a really hard time.

Basically, symptoms I thought were related to my Babesia infection were really coming from the Bartonella. That's the one that really makes my neurological symptoms flare up. God allowed me to have a fantastic first week on Rifampin where I felt good and even was able to go to the doctor's office without earplugs or sunglasses by the end of that week. So, He showed me what the Rifampin could do - that it was the right drug for me to be on basically. Then the Rifampin side effects came on which is mainly exhaustion and flu like symptoms. I get so overwhelmingly tired that holding my head up off the pillow is too hard sometimes. I had to go back on oxygen a few days last week and my energy improved - well, that sounds misleading, basically I was simply able to sit up in the bed instead of lying flat all day.

Next week will mark 20 months of IV treatments. In those 20 months I have had bloodwork done every week. In all of that time there have only been 3 times when I had a normal red blood cell count and a normal blood level - normally they are low meaning I stay anemic and that can cause exhaution as well. I have been taking an iron supplement this entire time which was supposed to get rid of that problem but it hasn't. In a CBC test (a complete blood count) they don't just count red and white blood cells and blood levels, they also look at the size of your red blood cells. Mine are always large and they don't carry oxygen to other parts of my body well. I have known my B12 levels were low and I tried to take a Vitamin B complex but it made me feel sick to my stomach. I happened to tell the doctor that on my last visit (God put it in my head I feel certain) and he wrote me a prescription for B12 injections I can give myself. I had not tried them out because I wanted to see exactly what the Rifampin would do as far as side effects, but once I was just knocked out by the exhaustion I knew I needed to start the shots. There is a type of anemia called pernicious anemia which is caused by a lack of B12. It can cause your red blood cell count to be low and for the cells to be large. I'm praying that is the type of anemia I have and that the B12 injections work very well for me. I do know that I took a day off the Rifampin last week and then the next day I did my first B12 shot and by the next day I was able to go into the kitchen and get my own bowl of cereal. Doesn't sound like much, but it's really a big deal compared to how I have felt. I don't know if it will help raise my blood pressure in the end, but I pray something will because it's staying around 70-80/45-60 and that's really low and is yet another thing that adds to the exhaustion.

I believe we are on the right track - I've just been frustrated that the fight isn't over yet. I'm ready to pull this line out of my arm and be able to get out and about in the world. It's not quite time for that yet and I have to realize that doesn't mean God isn't answering my prayers. In fact, it would have been so much worse if I had asked for my PICC line to be removed before God showed me I needed more IV meds! We have been blessed to have a doctor who works with us so well and allows me to be so active in coming up with a treatment protocol. We are really just blessed to have a doctor here in town AT ALL! I could still be stuck in Kansas City! God answers prayers every day. It's just when you're in a battle for this long it can be easy to just give up and get mad. I have to allow God to work in my heart every day and keep me from feeling hopeless. He is my strength and my shield for certain.

Oh, the other thing about the Rifampin is that I can't focus as well while I'm on it. It makes updating on here so difficult! So, if I don't write often that's why, but know that I'm still waging war on these diseases. I feel God will see me through all of this, it's just exhausting to go through and sometimes just exhausting to even think about. It was nice when I was on the Gentamicin and I was able to get out and about and see what progress I was making. However, I also realize that the one upside to my kidneys not filtering well was that it caused my blood pressure to go up. I was around 100/60 for a couple of months and that was HUGE! I felt so much better. So, keep praying that God leads us down the right path for my treatment and I pray that I will have enough energy to keep updating on here!

In these tired times verses like these help so much:

"Indeed we call blessed those who showed endurance." James 5:11 NRSV

"I will send down showers in season; there will be showers of blessing." Ezekiel 34:26 NIV

"God is the strength of my heart and my portion forever." Psalm 73:26 NIV

Sorry if this has been rambling or confusing - but I did my best :) No proof reading though, I'm simply too tired! Sending much love to all of you and lots of appreciation for your love and prayers!
K