I get frustrated about what my life has been like over the past 2 years. I find myself questioning God a lot about the "whys" and "whens" and I don't seem to find answers. I watched a sermon online this week that reminded me of something important - God is sovereign over ALL things. I already knew that, but I needed to be reminded and maybe I need to focus on that more every day. I need to remember that if I believe that God is sovereign over ALL things, then I should trust that what I'm going through is necessary for God's plan. I cannot understand God's ways because I cannot see things as God does. We often search for answers in the midst of trials and heartache - answers that we try to cling to in order to get through those things. I know that for the past 2 years I have told myself that God's had me go through this in order to mold me into the person He wants me to be, and I believe that's true. I would also add on that without going through all of this, well, I know I wouldn't be as close to God. Our relationship wouldn't be the same. But my relationship with God is different because in the end, I always choose to believe in God's plan and to do that I have to have faith in God's Word.
And while I can point to how my circumstances have lead me closer to God, the sermon I watched reminded me that I don't know the answers to WHY I'm going through this, and honestly, I don't need to know WHY. I have to trust God for WHY I'm going through this. As we grow older we can look back on certain times in our lives and see the benefits buried in bad times a little clearer. Can you think back and see that experiencing a heartache or a disappointment was necessary to shape you into a better person? Probably so. Of course, we might have experiences that left us bitter or angry. If we're honest, we would probably see that we have both. I believe the difference in whether we come out bitter or better is up to us. I think it comes down to our faith and trust in God. If we only sit back and think about how bad we have it, or how hard things are, we WILL become bitter. However, if we trust in God and have faith that even the worst times of our lives are part of God's plan for us, we can come out of hard times as a better person.
The Bible tells us that God's plans are for us to prosper and to give us hope and a future (Jeremiah 29:11). That doesn't mean every day is going to be wonderful for us. I have had to grasp that in order for us to prosper and have hope, we have to trust in God completely. Easy to say, VERY hard to do. And I have to state the fact that our worldly view of the word prosper does not have the same meaning as the biblical meaning. To prosper may not mean complete healing, or financial windfalls, or even less stress. It may be that God's definition of prosper means our continuing to grow closer in our relationship with Him. Very often it takes hard times and painful experiences for us to truly come to God because frankly, we've tried everything WE can do and nothing has worked. We then throw everything to God and pray for Him to make a masterpiece out of the mess we hand Him.
Each time God gets me through a really rough time I make the mistake of thinking, "Well, nothing can be as hard as that was!" WRONG - things can be worse, but the difference is that if and when things DO get worse, my faith has gotten stronger so I trust God to get me through AGAIN. And HE DOES! So, I've been sitting here thinking about my life, my problems, my worries, and once again I have to realize that handing things over to God isn't the only thing I can do - it's the only thing I should do.
Now, for my health issues. Things are getting better slowly I think. I've "tweaked" my medications - how much I take, when I take them - to try and keep myself from staying so terribly exhausted. The Rifampin is going to make me tired, but timing my other meds around it differently seems to help some. The other physical symptoms I deal with are extreme nerve pain (esp. from my neck to my back), overall body pain, and not getting enough oxygen. I'm not back on oxygen every day thankfully, but I need it more right now than I had. The neurological symptoms I'm fighting are mental confusion, difficulty processing new information, changes in my routine, inability to focus on anything (even simple conversations sometimes), and mood changes. Treatment often causes some symptoms to flare and for now my back pain and inability to think clearly are the most troublesome. I know people read this, especially my Lyme friends who deal with the same symptoms, and think, "She doesn't have too much trouble thinking clearly or she wouldn't be able to write this!" However, I must remind everyone now that when I get a message out clearly these days, it's because GREAT effort and a lot of time have been put into writing it. Also, writing has always been what I loved to do and anyone who knows me well would tell you I talk all the time :) Although if you read this you probably already figured that out from my long, rambling posts! But whenever something comes out clearly I think it's God allowing it to happen.
I do think we have hit upon a BIG thing that may help tremendously. I know I've explained that my red blood cell count is always low and so is my hemoglobin and hematocrit. Red blood cells carry oxygen and hemoglobin is actually the protein molecule in the red blood cell that carries the oxygen. Hematocrit is the proportion of blood, by volume, that consists of red blood cells. Now, for the past 20 months I have had weekly blood work done and every week those three things are low. We had been under the impression that I was dealing with iron deficiency anemia (there are several types of anemia) and I was put on iron supplements but somehow the numbers never got better. When I came to my doctor here in town he saw that my B12 was low - which we've known for a long time - and he suggested I go on a B Vitamin complex. Of course, at that time our first concern was how to stop, or slow down, my seizures so we didn't get around to the B Vitamin complex until this fall when the siezures had improved. I tried to take the B Vitamins but they would make me feel nauseated, so I stopped. Then we dealt with the whole gallbladder issue and I thought perhaps that was the real reason I had felt sick on the B Vitamin. So, I tried again in December but no change. When I saw the doctor in January I happened to remember to tell him about it. He said we would try B12 injections. First we were to do weekly injections, but he said if I could feel a difference that I could give them daily. I did feel a difference after the first few shots so I started daily injections and this week, for the FIRST time in 20 months, my red blood cell count, hemoglobin AND hematocrit levels were all inside the normal range. B12 is essential to the production of red blood cells and since red blood cells are what carry oxygen around and lack of oxygen is a big reason I stay exhausted - well, you can imagine how happy I am about what this could mean for me. We're not sure if I'm just low in B12 or if I have pernicious anemia which occurs when the stomach doesn't produce the protein that binds with B12 so it can be properly absorbed in the small intestine. If that's the case then B12 injections will be a life long thing. But, for now, that's not the issue - we just need to get my levels up and see if my symptoms improve.
That's my big news and hopefully over the next few weeks we'll also see the shape of my red blood cells come back into the normal range. Mine are too large and are misshaped so they don't work as efficiently as they should. This could mean a lot towards me having more energy which means I might be able to try getting out in the world again. For now just walking to the kitchen is tiring. But through all of this I will trust that God leads me as we continue forward in my treatment. I know that He planted the question about Vitamin B12 in my head to ask the doctor because it wasn't on my list of things to talk about with him! Although it's hard to have improvements come so slowly and I want to be able to jump out of bed and get back into a normal life, well, my body couldn't handle that. I think that's where trusting God comes in. I have to trust that God isn't just leading me through the tough times, but that He has the exact timing of my healing and improvements mapped out! He is always working in my life - even though there are so many times when I can't see it or feel it. It's hard to be frustrated all of the time and I have felt that way a lot lately so I want to change it. I have just found that the best way to get rid of that frustration is to refocus on my faith in God.
Thank you all for continuing to keep me in your prayers and know that God hears those prayers! He is working in all of our lives ALL of the time!
"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
"Lord, let your constant love surround us, for our hopes are in you alone." Psalm 33:22
Much love to you all!
K
Monday, February 21, 2011
Thursday, February 10, 2011
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
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
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