I am so very human and God made that crystal clear to me this week. He showed me just how impatient I am. We all know the “give them an inch and they’ll take a mile” phrase. We use it to describe people who are never satisfied with what they have. People who ask for something and when they get it they immediately ask for something else, something more. We can easily spot that in someone else but we rarely notice it in ourselves. This week God showed me how I too want to “take a mile”. I raved about the progress I got to see last week when I went to the doctor’s office. Then I had a few really hard days where I went back down and I was crushed. In my last entry I explained that I believed God let me have that really good day so that I might see a light at the end of this long tunnel. However, I am human and after that really good day I wanted MORE. I wanted to get up and clean my house, or better yet to get out of my house. I wanted to go out in public and not be bothered by noise or lots of people moving around. I wanted to drive my car. It’s been almost 16 months since I have driven at all. I wanted to be a “productive member of society” again. I simply wanted MORE!
This week I got a little taste of MORE and I liked it! Since I have been on the Gentamicin I am happy to report that I have not had any allergic reactions or seizures during treatment. I haven’t had a full grand mal seizure in a month! To God be the glory!!! I asked M if I could try to go without a “baby sitter” since treatments were going well. I haven’t been able to be stay home alone for almost 2 months. I get tired of feeling like people have to arrange their lives around me. If M had a business meeting my mom would have to give up her day to come here and take care of me. I wanted to see how I did staying by myself. So, we decided that when M went to the grocery store I could stay home alone. I did very well. I felt up to the challenge of taking care of myself for longer periods of time. So when M had 3 business meetings scheduled Tuesday I stayed at home alone. But this time I actually did something – I did LAUNDRY!!!! I washed 3 loads of laundry over a 7 hour period. I would put some clothes in the washer and go rest for awhile and then when I felt up to it I would go put those in the dryer and start a new load in the washer. I knew that if I happened to wash some and then not feel like putting them in the dryer that M could do that when he got home. I was so very happy when M got home and I showed him that not only did I wash 3 loads of clothes – I hung them up and put them away! I felt productive. I felt like a help and not a burden. I felt GOOD! The only bad thing was that getting up and moving showed me that the past 2 years I’ve spent in bed have taken a serious toll on my body. I have no muscle strength at all! I know it will take time to get that back, but I did laundry and I was pretty amazed that I did it! That night I had some really bad muscles jerks and spasms, but it wasn’t a true seizure. I realized that if I was going to be up and moving I needed to get back on some Valium so my brain wouldn’t go on overload and start misfiring signals at the end of the day!
Now we get to the part where I’ve been given an inch but want to take that mile. Wednesday I took the Valium and then changed the sheets on the bed and put the dirty ones in the wash. I then proceeded to take a shower and wash my hair. That’s really why I changed the sheets because after my shower I wanted to climb into a clean bed! I even washed the blanket on top of the bed! I didn’t move around as much that day and I did get tired much faster, but I felt good about what I had accomplished. The Valium did the trick and I didn’t have any seizure like muscle jerks that night – HOORAY!!! On Thursday I took my Valium and swept, well “Swiffered” actually, the bedroom floor. I eased into the hallway and by that point I realized I was pushing too hard and needed to get back in the bed.
I did get back into my bed, but I was frustrated. I wanted to clean the floors in the whole house. I really wanted to clean the whole house. That’s my problem. For years I have battled with alternating “good days” where I could do lots of things to “bad days” when I would have to stay in bed unable to do anything really. Living like that caused me to really push myself on a “good day” because for all I knew the next day would be a “bad day” and I could be stuck in bed for a week. I noticed I was back in that mindset this week. I had to stop and tell myself that I physically could not handle my old routine. My body has been through so much over the past year or two. While I am seeing amazing progress, I have to force myself to take things slowly or I’ll make things worse! So Friday I stayed in bed. I really didn’t have a choice because my body wasn’t feeling like doing anything that day. Again I was frustrated. In my heart I want to go to the grocery store, I want to cook dinner, I want to clean the house. Simply put I want to be a good wife and take all of those burdens off my husband’s shoulders. I want to be productive.
That’s when God got to me. He made me realize that I was making HUGE strides from where I was just two weeks ago but I wasn’t being truly thankful for them. He was answering my prayers and I was able to do things but instead of being thankful, you guessed it, I wanted MORE! God made me stop and realize that while I may not be able to take ALL of the burdens off of M’s shoulders, I did remove one of them. I did laundry. Then I did something I never thought I would do – I thanked God for laundry! I used to hate doing laundry and I complained, sometimes out loud and sometimes just in my head, any time I put a load in the washer. God showed me how grateful I should be to do laundry. Doing laundry requires some things we probably all take for granted. First, being physically able to complete the task is a blessing and I never thought about that until now. Second, most of us have washers and dryers that do the majority of the work themselves which is a blessing when you think of all the people in this world who don’t have such luxuries. Finally, doing laundry means we are blessed simply by having clothes to wash.
I remember telling God that as I healed I didn’t want to take anything for granted anymore – even the little things. But, as I said, I am human and while I did thank God for having a couple of good days and feeling accomplished, I quickly got frustrated with not being able to do more. Now God has shown me just how amazing my week has been. I did laundry, I took a shower and washed my hair, I changed the bed sheets, I “swiffered”, and I was able to stay home by myself! Thank you dear Lord for giving me that strength! Glory be to God for the healing He is performing in my body! I’m tired today but I’m happy because this week I did laundry. Only God knows what my body will feel up to doing this coming week. He’s showing me how to appreciate what I can do and not worry about what I can’t do. This journey of healing is on His time table, not mine. Instead of being frustrated by that I should be comforted by it because I prayed for His will to be done and His ways are the best ways. He also made me see the fear I have about healing. You may be wondering what there is to fear about being healed. Well, I didn’t know myself until He made it clear to me. Basically I have been sick for so long that I don’t know how to live like a healthy person. I told M I had no idea what I would do when/if I got well. The doctors say that I need to take a year to allow my body to detox from all these drugs and to let my body rest from the beating it has taken during treatment. God made me realize I was getting ahead of myself. If I pray for His will to be done then I should not be worried or fearful about my future. I should rest in the knowledge that He will show me what to do as I forge ahead and He will lead me into the next phase of my life. I have no idea what His will entails, but it could very well be that it involves me feeling better than I ever have before. Wouldn’t that be amazing? No matter what though, He’s told me to be thankful for laundry. So, from now on, every time I load that washer I want to make sure I stop and thank God because He’s blessed me so much!
Finally, I wanted to share the following excerpts from the book, “100 Days in the Secret Place” which were written in the late 1600s:
“Do not waster your suffering. Let suffering accomplish what God wants it to in your life. Never get so hard that you suffer for no reason and for no purpose. Paul says, ‘God loves a cheerful giver.’ How much He must love those who cheerfully give themselves to His dealings.” – Archbishop Francois de Fenelon
I need to focus on cheerfully giving myself to God and what His will is for my life. Focusing on today and not pushing towards what I want for tomorrow.
“When you seek God’s will alone, you find it everywhere, and you cannot go astray. Wanting what God wants always puts you on a straight path. The future is not yet yours; it may never be. Live in the present moment. Tomorrow’s grace is not given to you today. The present moment is the only place where you can touch the eternal realm.” – Archbishop Francois de Fenelon
And finally one simple verse that I should read every single day:
“Give thanks in all circumstances for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:16
Much love to you all –
K
Saturday, August 28, 2010
Saturday, August 21, 2010
Walking without fainting...
So far I’ve been tolerating the Gentamicin fairly well although getting back in the routine of twice daily treatments has been difficult. I had been questioning whether or not we made the right decision to go back on the IV antibiotics. Don’t you hate when you make a decision based on rational facts and then turn around and second guess yourself once you act on your decision? I usually don’t do that but the IV drugs make me question just about everything I think, say, or do. I know that M and I made this decision because we both felt God leading us to resume treatment so I hated feeling like I wasn’t trusting our decision. I think those thoughts were also mixed up with being scared of going back on treatment. Treatment is a catch 22 basically. When I stopped many of my symptoms returned or got worse. However, going back on antibiotics can also exacerbate symptoms. Then I also have to worry about side effects of the drugs as well as the ever dreaded “herx” reaction. For those who haven’t read much of this a Herxheimer reaction occurs when the antibiotics kill off a lot of bacteria at once which creates a build up of toxins in the body. Many people think a herx can only manifest physically causing headaches, muscle and joint pain, fevers, etc. When I was in Kansas City I found that it’s possible to also have mental or emotional herx reactions. These can cause of severe mood swings, horrible depression, anxiety, confusion, and even rage. Basically it doesn’t matter if you’re on treatment and killing bacteria or off treatment and dealing with recurring symptoms because all in all Lyme, Bartonella, Babesia and other co-infections suck the life out of you.
There is good news to report and I’m so happy about that! Monday we had to go see the doctor and I felt like I needed to try to push myself to “be normal” by not wearing ear plugs or headphones. I brought them along just in case I needed them though. I also told M to park in the parking deck rather than use the hospital valet service because I wanted to try walking instead of using a wheelchair. I didn’t even feel very anxious about going. I wasn’t pushing M to leave 20 minutes early nor was I pacing around making sure I had everything I needed. I felt that was God giving me the courage to try and venture into the outside world. For the first time in over 10 months I walked outside without ear plugs and headphones. The noises were loud but I wasn’t ready to scream or have a seizure. I walked into the hospital and didn’t jump at the sound of people’s voices or even the beeps of the elevators. Notice I keep writing, “I walked” because that in itself was a major deal! We entered the doctor’s office and his nurse didn’t even recognize me! I still had on sunglasses to deal with the lights but for the first time the doctor and his staff saw me without a wheelchair, without headphones, and even without an oxygen tank! I was simply giddy about my progress! I now realize how bad things have been when going to the doctor’s office without the aid of a wheelchair, oxygen, or noise cancelling headphones makes me so excited! After the appointment M and I were smiling from ear to ear because these were such huge steps for me to take.
I knew God was responsible for showing me such progress. I believe that even though I couldn’t tolerate the Vancomycin, it did kill off some bacteria and the small amount of Gentamicin in my system had helped as well. I started thinking about the possibility of having some kind of life again. I dreamed of getting out of this house and going places. M and I felt like we were seeing a small bit of light at the end of this long tunnel! That’s why the herx I started having on Wednesday brought me down so low. I had just seen progress and 48 hours later I was feeling so sick and unable to even control my emotions. I was crying and asking M repeatedly if I could just quit treatment. It’s so hard to wrap your brain around the concept of how making progress in killing off bacteria can make you feel so horrible. The emotional side of a herx is the worst part for me. I can handle feeling like crap but being unable to stop irrational thoughts, anxiety or anger is extremely frustrating for me and I know it has to be so very hard on M! By Thursday I was very depressed. I wanted to feel like leaving the house again. I wanted to catch a glimpse of “real life” again. I didn’t want to go back into the hole so to speak.
Then yesterday I realized something. God didn’t allow me to have such a good experience on Monday just to cruelly strip it away from me a couple of days later. I believe He showed me progress on Monday so that I could see what I was fighting so hard for! Perhaps He knew I needed to make such strides in order to handle the next 2 to 3 months of IVs. I’ve been on IVs for 14 months now and I want to be off of them so much! I am simply dying to get this PICC line out of my arm as well! But I have to hold on and ride out the rest of this journey if I’m going to be able to function in the real world again. God is with me and I know He will pull me through the next few months. The doctor said I should stay on Gentamicin for as long as we see progress. I’ll take a break for a day or two after a few weeks and see how I feel then. I pray I’m able to do even more by then. Although being outside without headphones was a huge step, I want to be able to be out in the world and not be aware of every day noises. I made it through without headphones but I was very aware of every noise I head. God could be showing me that His plan for me might possibly include me feeling better than I ever have before. I pray that is the case.
So, I write this as my IV bag drips away. I write this as I try to control my thoughts and cling to hope. I write this as I continue to be a huge “work in progress”. I write this as I feel such thankfulness for any and all improvements. I write this in awe of how God works in this world and how much He is working in me. This process has taught me so many things but one of the main things has been to never take anything for granted. I pray that as I improve and after I’m done with treatment that I don’t forget how lucky I am. I want to feel fortunate when I’m able to walk instead of using a wheelchair or when I’m able to hear everyday sounds and not immediately have a seizure. I want to remember what it was like to be stripped of everything so that I fully appreciate whatever I am able to do when I stop treatment. That’s a hard thing to do because I know just how easy it is to take things for granted. I know because even in my situation I am so human and don’t always thank God for what I do have. I may still be going through the hardest time of my life but God has still blessed me beyond measure! He has given me a loving family and good friends who pray for me every day. Not to mention I think I have the best husband on earth and feel extremely fortunate to be able to spend my life with him. We both feel as though we have gotten a good lesson in the meaning of the marriage vow to love each other “in sickness and in health”! And finally, I’m thankful for you. I am thankful for anyone who takes the time to read my rambling thoughts, who prays for me, and who lets me know they are with me in spirit as I go through all of this. Thank you from the bottom of my heart!
Finally, one of the verses that I love so much and cling to throughout all of this:
“Those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:31 (NRSV)
And I did just that on Monday – I walked and I did not faint. That, my friends, is no small miracle and I will not take it for granted!
Much love-
K
There is good news to report and I’m so happy about that! Monday we had to go see the doctor and I felt like I needed to try to push myself to “be normal” by not wearing ear plugs or headphones. I brought them along just in case I needed them though. I also told M to park in the parking deck rather than use the hospital valet service because I wanted to try walking instead of using a wheelchair. I didn’t even feel very anxious about going. I wasn’t pushing M to leave 20 minutes early nor was I pacing around making sure I had everything I needed. I felt that was God giving me the courage to try and venture into the outside world. For the first time in over 10 months I walked outside without ear plugs and headphones. The noises were loud but I wasn’t ready to scream or have a seizure. I walked into the hospital and didn’t jump at the sound of people’s voices or even the beeps of the elevators. Notice I keep writing, “I walked” because that in itself was a major deal! We entered the doctor’s office and his nurse didn’t even recognize me! I still had on sunglasses to deal with the lights but for the first time the doctor and his staff saw me without a wheelchair, without headphones, and even without an oxygen tank! I was simply giddy about my progress! I now realize how bad things have been when going to the doctor’s office without the aid of a wheelchair, oxygen, or noise cancelling headphones makes me so excited! After the appointment M and I were smiling from ear to ear because these were such huge steps for me to take.
I knew God was responsible for showing me such progress. I believe that even though I couldn’t tolerate the Vancomycin, it did kill off some bacteria and the small amount of Gentamicin in my system had helped as well. I started thinking about the possibility of having some kind of life again. I dreamed of getting out of this house and going places. M and I felt like we were seeing a small bit of light at the end of this long tunnel! That’s why the herx I started having on Wednesday brought me down so low. I had just seen progress and 48 hours later I was feeling so sick and unable to even control my emotions. I was crying and asking M repeatedly if I could just quit treatment. It’s so hard to wrap your brain around the concept of how making progress in killing off bacteria can make you feel so horrible. The emotional side of a herx is the worst part for me. I can handle feeling like crap but being unable to stop irrational thoughts, anxiety or anger is extremely frustrating for me and I know it has to be so very hard on M! By Thursday I was very depressed. I wanted to feel like leaving the house again. I wanted to catch a glimpse of “real life” again. I didn’t want to go back into the hole so to speak.
Then yesterday I realized something. God didn’t allow me to have such a good experience on Monday just to cruelly strip it away from me a couple of days later. I believe He showed me progress on Monday so that I could see what I was fighting so hard for! Perhaps He knew I needed to make such strides in order to handle the next 2 to 3 months of IVs. I’ve been on IVs for 14 months now and I want to be off of them so much! I am simply dying to get this PICC line out of my arm as well! But I have to hold on and ride out the rest of this journey if I’m going to be able to function in the real world again. God is with me and I know He will pull me through the next few months. The doctor said I should stay on Gentamicin for as long as we see progress. I’ll take a break for a day or two after a few weeks and see how I feel then. I pray I’m able to do even more by then. Although being outside without headphones was a huge step, I want to be able to be out in the world and not be aware of every day noises. I made it through without headphones but I was very aware of every noise I head. God could be showing me that His plan for me might possibly include me feeling better than I ever have before. I pray that is the case.
So, I write this as my IV bag drips away. I write this as I try to control my thoughts and cling to hope. I write this as I continue to be a huge “work in progress”. I write this as I feel such thankfulness for any and all improvements. I write this in awe of how God works in this world and how much He is working in me. This process has taught me so many things but one of the main things has been to never take anything for granted. I pray that as I improve and after I’m done with treatment that I don’t forget how lucky I am. I want to feel fortunate when I’m able to walk instead of using a wheelchair or when I’m able to hear everyday sounds and not immediately have a seizure. I want to remember what it was like to be stripped of everything so that I fully appreciate whatever I am able to do when I stop treatment. That’s a hard thing to do because I know just how easy it is to take things for granted. I know because even in my situation I am so human and don’t always thank God for what I do have. I may still be going through the hardest time of my life but God has still blessed me beyond measure! He has given me a loving family and good friends who pray for me every day. Not to mention I think I have the best husband on earth and feel extremely fortunate to be able to spend my life with him. We both feel as though we have gotten a good lesson in the meaning of the marriage vow to love each other “in sickness and in health”! And finally, I’m thankful for you. I am thankful for anyone who takes the time to read my rambling thoughts, who prays for me, and who lets me know they are with me in spirit as I go through all of this. Thank you from the bottom of my heart!
Finally, one of the verses that I love so much and cling to throughout all of this:
“Those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:31 (NRSV)
And I did just that on Monday – I walked and I did not faint. That, my friends, is no small miracle and I will not take it for granted!
Much love-
K
Wednesday, August 11, 2010
And then there's Plan B...
I wanted to write an update sooner but was not able to do so. I had a bad reaction to the Vancomycin every day that I tried to take it. When my lips and tongue started to swell we knew I had to stop the drug. This was so frustrating to me because I want to be able to get back into “treatment mode” and get these IVs over with sooner than later. For now I just have to use what has become the mantra in my house lately – “It is what it is.” There is nothing I can do about setbacks and getting upset won’t help anything so it was back to the drawing board to see what we would try next.
We did our own research and the doctor did his and we came up with trying Gentamicin which is another antibiotic that fights Bartonella well, but it’s not in the same class of antibiotics as Vancomycin. We think it will be easier on my body but, as with all IV antibiotics, there are serious risks with it as well. When you are on these drugs, no matter which ones, you have to have weekly blood work done. I have a basic CBC (complete blood count) , a chemistry panel (tests levels of sodium, potassium, liver function, kidney function, etc.) and a test checking how quickly my blood clots to make sure I’m on the right dose of blood thinner. Now that I’m on Gentamicin I will also have a weekly test to check the levels of the drug in my body and I THINK this is due to the fact that it can cause kidney problems, but I’m not sure. Treatment is hard because it’s a very fine line between taking enough drugs to kill the bacteria but not so much that you overload your body and cause damage. It is definitely a balance of risks versus rewards. I started the Gentamicin on Monday and started with one dose a day until today. I’m taking my morning dose as I type this and in 10 hours I will take my second dose. We’re praying all goes well as I start into my new drug and new routine.
My body is tired. No, my body is actually exhausted. I’ve been hitting it hard with all of these drugs and it’s just worn out. I wish I could rest more but sleep eludes me. My central nervous system is so overloaded and out of whack that my brain simply won’t allow me to rest properly. I’m still fighting off seizures and I have excrutiating nerve pain that feels like an electric current is running through my body. I’m tired of this fight but I know it will be worth it if it leads to my healing. I won’t know how much permanent damage has been done to my brain, heart, nerves, etc. until I’m off of treatment and even then it can take up to a year for my body to recover. I may see a lot of improvement in the first few months after stopping treatment, but I will have to wait for a year to see what all treatment has done for me or done to me. My prayer is that I can handle this new IV antibiotic for 8 to 10 weeks then switch to IV fluids for 6 weeks and hopefully see enough progress to finally get my PICC line pulled and switch to oral medications.
I know God is with me all the time. I know that He is aware of every ache and pain in my body just as well as He knows my heart. I try to focus on that fact. I try to see all of this immense pain that I go through as part of a much bigger plan. I want all of this to make me a better person. But, at the same time, I’ve been crying out to God a lot. I’ve been trying to put my foot down and tell Him that I just cannot take anymore. It’s humorous that I try and “put my foot down” with God isn’t it? People have told me that reading about all that I’m going through and seeing me cling to God during this time has reached them. They say it’s made them see how to get through their own struggles. I am aware though that if people draw closer to God because of what I write, well, it’s because of God not because of me. When people tell me these things it humbles me. It humbles me to think that God is using my life to reach others. I do admit that there are many days when I’m going through the pain that I ask God, “Are you sure there isn’t another way for me to reach these people? Is it a requirement that I go through this to do so?” and I also say, “God, I know it’s selfish, but I’m beginning to not care about reaching others. Can’t you just heal me now and let me tell people about the awful years I endured and how You were the single reason I got through it all?” I feel so bad about that. If God is using me in ANY way shouldn’t I feel honored?
I wish that I could handle these trials like Job handled his or like Paul handled his. Paul talks about how he is content NO MATTER the circumstances because he can do everything through God who gives him strength (Philippians 4:11-13). He wrote that while he was chained in a jail cell for teaching people about God and how His son, Jesus, walked the earth and then died for our sins. He was in JAIL because he was trying to reach out to people and was willing to risk his life to spread the gospel. We have never known what it would be like to be persecuted for our faith because we live in a country where everyone is free to practice whatever religion they believe in. What’s sad is that even though we don’t have to risk anything to tell people about Jesus most of us don’t do it very often. I lump myself in with that group because before all of this happened, I had a relationship with God but was never sure how to talk to others about Him. I praise Him more when I write this than I did before. I realize that I praise Him more BECAUSE of what I’ve been through and what I continue to go through. Hmmm, I may have just answered my own questions. I simply don’t praise God enough for the good things in my life while often blaming Him for the bad things. I should simply be thankful that while I may be going through a lot, He has yet to give me more than I can bear. There have been a couple of times lately where I’ve been in a lot of pain and have cried out to Him, “God I cannot handle this pain on top of everything else. Please take this from me!” and right away one of my pains will ease. I’m not miraculously healed completely, but He definitely lifts whatever my current burden is and I feel Him lift it from me.
I feel like God has plans for my healing. Honestly I feel that it won’t be long until I do see some major improvements. Maybe a few months but that’s not long at all compared to how long I’ve been suffering. I do believe He has good things planned for me. I’ve said many times before that God reaches me the most through my writing. It’s when I write that He shows me things. So I guess even my entries on here serve to help me just as much as, or perhaps even more, than they might help or reach any of you reading them. When I start to write my updates I often think, “I’m just going to write about what’s going on physically and not put the pressure on myself to write about God.” What’s funny is that those are the entries that end up getting the most responses. That’s when I know it’s God that worked through me and that reaching those people was definitely not my own doing. I’m starting to see now that while what I’m going through may be very hard, I’m not stuck going through it alone. God is the one who lifts me up and sees me through. No matter how bad things may get in my life, or in your life, if we call on God to see us through, He will do so every time.
“Do not fear, for I have redeemed you; I have called you by name; you are mine.” Isaiah 43:1 (NRSV)
“The Lord will be your everlasting light, and your days of sorrow will end.” Isaiah 60:20 (NIV)
Again I thank you for your continued prayers and support. In fact, I can’t thank you enough.
Much love-
K
We did our own research and the doctor did his and we came up with trying Gentamicin which is another antibiotic that fights Bartonella well, but it’s not in the same class of antibiotics as Vancomycin. We think it will be easier on my body but, as with all IV antibiotics, there are serious risks with it as well. When you are on these drugs, no matter which ones, you have to have weekly blood work done. I have a basic CBC (complete blood count) , a chemistry panel (tests levels of sodium, potassium, liver function, kidney function, etc.) and a test checking how quickly my blood clots to make sure I’m on the right dose of blood thinner. Now that I’m on Gentamicin I will also have a weekly test to check the levels of the drug in my body and I THINK this is due to the fact that it can cause kidney problems, but I’m not sure. Treatment is hard because it’s a very fine line between taking enough drugs to kill the bacteria but not so much that you overload your body and cause damage. It is definitely a balance of risks versus rewards. I started the Gentamicin on Monday and started with one dose a day until today. I’m taking my morning dose as I type this and in 10 hours I will take my second dose. We’re praying all goes well as I start into my new drug and new routine.
My body is tired. No, my body is actually exhausted. I’ve been hitting it hard with all of these drugs and it’s just worn out. I wish I could rest more but sleep eludes me. My central nervous system is so overloaded and out of whack that my brain simply won’t allow me to rest properly. I’m still fighting off seizures and I have excrutiating nerve pain that feels like an electric current is running through my body. I’m tired of this fight but I know it will be worth it if it leads to my healing. I won’t know how much permanent damage has been done to my brain, heart, nerves, etc. until I’m off of treatment and even then it can take up to a year for my body to recover. I may see a lot of improvement in the first few months after stopping treatment, but I will have to wait for a year to see what all treatment has done for me or done to me. My prayer is that I can handle this new IV antibiotic for 8 to 10 weeks then switch to IV fluids for 6 weeks and hopefully see enough progress to finally get my PICC line pulled and switch to oral medications.
I know God is with me all the time. I know that He is aware of every ache and pain in my body just as well as He knows my heart. I try to focus on that fact. I try to see all of this immense pain that I go through as part of a much bigger plan. I want all of this to make me a better person. But, at the same time, I’ve been crying out to God a lot. I’ve been trying to put my foot down and tell Him that I just cannot take anymore. It’s humorous that I try and “put my foot down” with God isn’t it? People have told me that reading about all that I’m going through and seeing me cling to God during this time has reached them. They say it’s made them see how to get through their own struggles. I am aware though that if people draw closer to God because of what I write, well, it’s because of God not because of me. When people tell me these things it humbles me. It humbles me to think that God is using my life to reach others. I do admit that there are many days when I’m going through the pain that I ask God, “Are you sure there isn’t another way for me to reach these people? Is it a requirement that I go through this to do so?” and I also say, “God, I know it’s selfish, but I’m beginning to not care about reaching others. Can’t you just heal me now and let me tell people about the awful years I endured and how You were the single reason I got through it all?” I feel so bad about that. If God is using me in ANY way shouldn’t I feel honored?
I wish that I could handle these trials like Job handled his or like Paul handled his. Paul talks about how he is content NO MATTER the circumstances because he can do everything through God who gives him strength (Philippians 4:11-13). He wrote that while he was chained in a jail cell for teaching people about God and how His son, Jesus, walked the earth and then died for our sins. He was in JAIL because he was trying to reach out to people and was willing to risk his life to spread the gospel. We have never known what it would be like to be persecuted for our faith because we live in a country where everyone is free to practice whatever religion they believe in. What’s sad is that even though we don’t have to risk anything to tell people about Jesus most of us don’t do it very often. I lump myself in with that group because before all of this happened, I had a relationship with God but was never sure how to talk to others about Him. I praise Him more when I write this than I did before. I realize that I praise Him more BECAUSE of what I’ve been through and what I continue to go through. Hmmm, I may have just answered my own questions. I simply don’t praise God enough for the good things in my life while often blaming Him for the bad things. I should simply be thankful that while I may be going through a lot, He has yet to give me more than I can bear. There have been a couple of times lately where I’ve been in a lot of pain and have cried out to Him, “God I cannot handle this pain on top of everything else. Please take this from me!” and right away one of my pains will ease. I’m not miraculously healed completely, but He definitely lifts whatever my current burden is and I feel Him lift it from me.
I feel like God has plans for my healing. Honestly I feel that it won’t be long until I do see some major improvements. Maybe a few months but that’s not long at all compared to how long I’ve been suffering. I do believe He has good things planned for me. I’ve said many times before that God reaches me the most through my writing. It’s when I write that He shows me things. So I guess even my entries on here serve to help me just as much as, or perhaps even more, than they might help or reach any of you reading them. When I start to write my updates I often think, “I’m just going to write about what’s going on physically and not put the pressure on myself to write about God.” What’s funny is that those are the entries that end up getting the most responses. That’s when I know it’s God that worked through me and that reaching those people was definitely not my own doing. I’m starting to see now that while what I’m going through may be very hard, I’m not stuck going through it alone. God is the one who lifts me up and sees me through. No matter how bad things may get in my life, or in your life, if we call on God to see us through, He will do so every time.
“Do not fear, for I have redeemed you; I have called you by name; you are mine.” Isaiah 43:1 (NRSV)
“The Lord will be your everlasting light, and your days of sorrow will end.” Isaiah 60:20 (NIV)
Again I thank you for your continued prayers and support. In fact, I can’t thank you enough.
Much love-
K
Sunday, August 1, 2010
Pushing on and going forward...
So we’ve got a new treatment plan. My symptoms flared while I was off the IV antibiotics. We knew that I needed to get back on them but we weren’t sure which one would work best for me. During this time God led me to talk to M about our being more active in creating a treatment regimen for me. We both started to research more and more about Lyme, Bartonella, Babesia, and other co-infections. While my doctor in Kansas City thought the Babesia was the likely culprit of my seizures, our research pointed us in a different direction. Lyme and Bartonella both attack the brain. They wreak havoc on the central and peripheral nervous systems. Bartonella in particular can cause seizures. This made more sense to us because my seizures never went away when I was treating the Babesia. We ordered a book that included treatment plans of 13 Lyme literate physicians. They discussed everything from proper antibiotic treatments to supplements to diet plans. We began to see a pattern in their treatment protocols. Then I told M we should really look into the treatment protocol of Dr. Burrascano who is considered one of the 3 pioneers in research of these diseases. He helped found the International Lyme and Associated Diseases Society. He’s also the author of the group’s treatment guidelines which he first wrote in 1984 and has updated 16 times to include the latest research findings. M and I both poured ourselves into research. Through Dr. Burrascano’s guidelines we found the two antibiotics he prefers to use in treating Bartonella but I’ve had serious side effects on one of them and the other is an antibiotic I had a slight allergic reaction to the oral form so we didn’t want to chance that with the IV form. We then went back to the drawing board and found that he uses Vancomycin when other IV antibiotics can’t be used. Vancomycin is a great antibiotic to fight infections but has a high level of toxicity and therefore is a “last resort” for some patients. We decided that it would be the best drug for me to use and in order to keep the level of toxins down we planned to do “pulse therapy”. Pulse therapy is when you do IV antibiotics for 4 days of the week and then IV fluids for the remaining 3 days to help rid the body of toxins. We had discussed with my doctor that we wanted to research some treatment options and then discuss them with him to hear his thoughts. He talked with M at length and agreed that while Vancomycin does have risks, my situation warrants taking those risks.
Having the antibiotic plan down we then researched supplements and diet plans that other Lyme doctors use. I’m now taking a Vitamin B complex, Vitamin D, and Vitamin K. I’m also taking an Iron plus protein pill to help keep my red blood cell count up. I take Iodoral to help my thyroid and Curcumin to help with cognition, memory, and to help inflammation. Then there’s an Omega 3 combination pill to help with heart health and inflammation. Finally, there are 2 different herbal drops taken orally which help the body get rid of neurotoxins. A buildup of neurotoxins can cause seizures so the drops are especially important. As for the diet, well, it stinks as most diet plans do I guess. However, it’s been proven that patients who are strict about taking their supplements and following the diet plan along with the antibiotic therapy have much more success at regaining their health and they do it at a faster rate so I’m trying my best. The diet is yeast free, glueten free (free of wheat), and free of refined sugars and corn syrups – which basically leaves me with meat, chicken, eggs, vegetables and a few fruits! The problem comes from my body being so out of whack with all of the diseases that I actually gag and have to force myself to eat those things. I can hardly stand red meat anymore and chicken isn’t great either. I love vegetables and fruit but they don’t fill you up. I was on a yeast free diet for a year before going to Kansas City and I was very strict about it but I was also able to go to Whole Foods and find a lot of the items I could eat and I was cooking the meals. Since I can’t do those things anymore poor M ends up having to do it all. My mom will cook whatever we ask her to but most of the dishes are best served freshly cooked and we don’t want her having to come over every night and cook dinner for us! We’re going to find a way to do all of this the best we can.
I started the Vancomycin this past Monday and did great on it until the end. I ended up turning red from the chest up. I was flushed, looked like I had a sunburn, and my lips and cheeks were numb. It’s a side effect only seen in patients taking Vancomycin and they call it “Red Man Syndrome”. It can be controlled with IV Benadryl, which I had taken at the beginning of treatment and again halfway through. I was worried that this side effect would mean the doctor would take me off of Vancomycin. I told M that 47% of people who use the drug have this side effect and sometimes it only occurs with the first dose. The doctor agreed I could stay on the drug but that I should only do one treatment daily for the first week and then try our plan of twice daily treatments. I didn’t have the reaction again so I will start the twice daily treatments on Monday. The drug has to be given 12 hours apart so that means I’ll be taking it from 6-9 a.m and 6-9 p.m. Those aren’t my ideal times, but we have to do what we have to do. Our motto for the past year has been, “It is what it is.” and it’s true once again.
God has been with me in so many ways over the past few weeks. I know He is always with me, but there are times when His presence is so overwhelming that you simply can’t mistake it for anything else. I want to write more about the things He’s done and the things He is doing in my life but haven’t yet found a way to describe it all. I pray that He will help me find the words to share it all in the coming week. The hard thing about going back on the antibiotics is that the drugs make it difficult for me to think and write very well. I’m hoping that doing twice daily fluids Fridays through Sundays will help me to feel well enough to keep writing. God will allow me to write when He’s ready for me to do so. I just get impatient about sharing what He’s doing but He’s the one who leads me in what to say. Since I can’t find the words yet I think He’s telling me to wait. I can say that some of my symptoms are already going away with just 4 days of antibiotic therapy. That’s good news but as I start twice daily treatments I will likely deal with a lot of side effects from killing off the bacteria. I’ve said before that this treatment is somewhat like chemotherapy in that you feel horrible when you’re on treatment but you go through it to feel better. I even had a woman comment on one of my posts who had been through chemo and she said my treatment sounded a lot like what she went through and she was sweet enough to say she would be praying for me. It’s a weird treatment because while some of my symptoms flare when I’m off the antibiotics others will flare when I’m on antibiotics. Once again, it is what it is.
I want to thank everyone for their support and prayers as I go into my 14th month of treatment. I knew this wouldn’t be a “quick fix” and that it would likely take 2-3 years to “get my life back” but I had no idea how hard it would be. I didn’t mind the time frame but I was ignorant of how that time would be spent and what physical trials awaited me! I want to also say that M and I know that God led us to the proper research materials and gave us the wisdom to come up with a treatment protocol we believe to be best for me. We know without His help none of this would be possible. These aren’t easy times but we feel that God is working in our lives more now than ever before. We know that He has a plan for us and we believe that plan includes my healing. Things are difficult for both of us but we trust in God’s plan for our lives and pray only that His will be done in our lives. That’s the best any of us can do isn’t it? Just to trust God, humble ourselves before Him, and pray that His will always be done in our lives. Again, thank you all for your prayers because we truly think they are what hold us together some days!
Here are a few verses that I’ve seen on my calendar and felt were very fitting for my situation:
“I lift my eyes up to the hills – from where will my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2 (NRSV)
“He will yet fill your mouth with laughter and your lips with shouts of joy.” Job 8:21 (NIV)
“For he will command his angels concerning you to guard you in all your ways.” Psalm 91:11 (NIV)
Much love-
K
Having the antibiotic plan down we then researched supplements and diet plans that other Lyme doctors use. I’m now taking a Vitamin B complex, Vitamin D, and Vitamin K. I’m also taking an Iron plus protein pill to help keep my red blood cell count up. I take Iodoral to help my thyroid and Curcumin to help with cognition, memory, and to help inflammation. Then there’s an Omega 3 combination pill to help with heart health and inflammation. Finally, there are 2 different herbal drops taken orally which help the body get rid of neurotoxins. A buildup of neurotoxins can cause seizures so the drops are especially important. As for the diet, well, it stinks as most diet plans do I guess. However, it’s been proven that patients who are strict about taking their supplements and following the diet plan along with the antibiotic therapy have much more success at regaining their health and they do it at a faster rate so I’m trying my best. The diet is yeast free, glueten free (free of wheat), and free of refined sugars and corn syrups – which basically leaves me with meat, chicken, eggs, vegetables and a few fruits! The problem comes from my body being so out of whack with all of the diseases that I actually gag and have to force myself to eat those things. I can hardly stand red meat anymore and chicken isn’t great either. I love vegetables and fruit but they don’t fill you up. I was on a yeast free diet for a year before going to Kansas City and I was very strict about it but I was also able to go to Whole Foods and find a lot of the items I could eat and I was cooking the meals. Since I can’t do those things anymore poor M ends up having to do it all. My mom will cook whatever we ask her to but most of the dishes are best served freshly cooked and we don’t want her having to come over every night and cook dinner for us! We’re going to find a way to do all of this the best we can.
I started the Vancomycin this past Monday and did great on it until the end. I ended up turning red from the chest up. I was flushed, looked like I had a sunburn, and my lips and cheeks were numb. It’s a side effect only seen in patients taking Vancomycin and they call it “Red Man Syndrome”. It can be controlled with IV Benadryl, which I had taken at the beginning of treatment and again halfway through. I was worried that this side effect would mean the doctor would take me off of Vancomycin. I told M that 47% of people who use the drug have this side effect and sometimes it only occurs with the first dose. The doctor agreed I could stay on the drug but that I should only do one treatment daily for the first week and then try our plan of twice daily treatments. I didn’t have the reaction again so I will start the twice daily treatments on Monday. The drug has to be given 12 hours apart so that means I’ll be taking it from 6-9 a.m and 6-9 p.m. Those aren’t my ideal times, but we have to do what we have to do. Our motto for the past year has been, “It is what it is.” and it’s true once again.
God has been with me in so many ways over the past few weeks. I know He is always with me, but there are times when His presence is so overwhelming that you simply can’t mistake it for anything else. I want to write more about the things He’s done and the things He is doing in my life but haven’t yet found a way to describe it all. I pray that He will help me find the words to share it all in the coming week. The hard thing about going back on the antibiotics is that the drugs make it difficult for me to think and write very well. I’m hoping that doing twice daily fluids Fridays through Sundays will help me to feel well enough to keep writing. God will allow me to write when He’s ready for me to do so. I just get impatient about sharing what He’s doing but He’s the one who leads me in what to say. Since I can’t find the words yet I think He’s telling me to wait. I can say that some of my symptoms are already going away with just 4 days of antibiotic therapy. That’s good news but as I start twice daily treatments I will likely deal with a lot of side effects from killing off the bacteria. I’ve said before that this treatment is somewhat like chemotherapy in that you feel horrible when you’re on treatment but you go through it to feel better. I even had a woman comment on one of my posts who had been through chemo and she said my treatment sounded a lot like what she went through and she was sweet enough to say she would be praying for me. It’s a weird treatment because while some of my symptoms flare when I’m off the antibiotics others will flare when I’m on antibiotics. Once again, it is what it is.
I want to thank everyone for their support and prayers as I go into my 14th month of treatment. I knew this wouldn’t be a “quick fix” and that it would likely take 2-3 years to “get my life back” but I had no idea how hard it would be. I didn’t mind the time frame but I was ignorant of how that time would be spent and what physical trials awaited me! I want to also say that M and I know that God led us to the proper research materials and gave us the wisdom to come up with a treatment protocol we believe to be best for me. We know without His help none of this would be possible. These aren’t easy times but we feel that God is working in our lives more now than ever before. We know that He has a plan for us and we believe that plan includes my healing. Things are difficult for both of us but we trust in God’s plan for our lives and pray only that His will be done in our lives. That’s the best any of us can do isn’t it? Just to trust God, humble ourselves before Him, and pray that His will always be done in our lives. Again, thank you all for your prayers because we truly think they are what hold us together some days!
Here are a few verses that I’ve seen on my calendar and felt were very fitting for my situation:
“I lift my eyes up to the hills – from where will my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2 (NRSV)
“He will yet fill your mouth with laughter and your lips with shouts of joy.” Job 8:21 (NIV)
“For he will command his angels concerning you to guard you in all your ways.” Psalm 91:11 (NIV)
Much love-
K
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