*Editor's Note: I apologize to those who read this entry when I first posted it at 10:30 or last night. I had been writing it in bits and pieces for a week and when I finished it I signed off and hit "POST" before really looking it over. Turns out I had another version of the same information lower down on the screen and couldn't see it. I told you all, my brain is malfunctioning & I cannot be held responsible for having these entries make sense, or apparently even be in the right order...sigh. Anyway, once I caught my error I erased the bottom part that may have been quite confusing for people to read!!! Hope you are all having a blessed day!
I've been trying to write this entry since I met with my IV doctor on Tuesday. I would write a litte and then stop because I wasn't sure if I could explain everything clearly. I'm praying God helps me get the information across successfully.
I wrote in earlier entries that the Babesia was causing severe mood swings and even a lot of rage. I believe I also wrote about how the medication for it (Mepron) was turning me into a psycho lunatic with a tendency to cry at the drop of a hat. I need to stop here just to say a big thank you to my mom and M for putting up with me so well! I wish I could get away from myself when I act like that, so it's hard to fathom how they can handle it with such patience. When I say mood swings I mean one minute I can be laughing and seem fine and then within a minute or two I'm furious over something stupid or I'm crying hysterically. I thank God for their ability to continue to put up with me. Now back to my update...
I also wrote earlier about how the doctor was trying some different things to help me not feel so crazy. Before I even started the Mepron my doctor already knew I would not be able to handle taking it twice a day every day, so the plan was to take it every 3 days. Even with the 2 day break between the doses, I still felt like I was going absolutely insane! So then we changed my IV treatment to help ward off some of the Mepron side effects. The easiest way to explain is to give an example, so if I took Mepron on Monday I would get IV fluids during both my morning and afternoon treatment sessions instead of IV antibiotics that day. Then on Tuesday, the day after the Mepron, I would get IV fluids again during morning treatment and switch back to IV antibiotics for my afternoon treatment session. That did seem to help my rage issues but I was still having a hard time. I am amazed by the patients who can take Mepron every day but it just goes to show how everyone handles different medications in distinctly different ways.
I realized that I was having a much harder time with everything by Saturday, October 24th. I had a stabbing headache behind my eye for a few hours and by the end of treatment I knew a seizure was coming on. I may have written about this in an earlier post but my brain is mush and I cannot remember what I have told to whom. Anyway, with an Ativan injection at the end of treatment and an extra oral dose of Ativan and Valium when I got home, we were able to keep me from having another grand mal seizure. I just had a lot of right side tremors and couldn't speak very well. This went on again on Sunday and Monday but I HATE Ativan shots because it's a thick medication to inject so they hurt. I just did my best with my oral meds to keep from seizing and I did not have anything worse than the difficulty speaking (horrible stuttering) and major muscle jerks and tremors. I knew I was going to have my meeting with my IV doctor Tuesday (October 27th) so I could discuss all of this then.
Medically speaking, Babesia is easier to get rid of than Lyme or Bartonella or even Influenza A and B really. However, the physical symptoms that manifest in some patients are hard to deal with. I am dealing with really bad joint pain, muscle pain and twitches, and horrible headaches. Really my whole body is in pain. Babesia doesn't stop there though. It goes a step further and messes with your mind making you feel so horribly depressed that you can't even think rationally. I was definitely getting heading into what felt like an emotional black hole. The good thing is that God allowed me to see these dark thoughts were not my own. He made me see that they were not how I think at all. I can't begin to explain how weird it feels to have your brain working against you. The closest description I've found is it feels like someone else is behind the wheel instead of me and they are controlling what thoughts pop into my head. The end result is me feeling as crazy as the Mad Hatter in Alice in Wonderland.
Now to tell you what news came from my meeting with the doctor. It was evident that we were going to have to change my treatment plan yet again because my body was going to seize if things kept going they way they were. Treating someone like me who has multiple chronic illnesses requires a lot of "tweaking" to the medications. By "tweaking" I mean that I might stay on the same medication but take it at different times or take a smaller or larger dose of it. Medicine is a science but it's also called a practice for a reason. That is because even the best doctors can't diagnose and treat illnesses with the exact same medication and the same method for each patient. It's trial and error no matter how you look at it.
The decision was made for me to take the Mepron every 4 days instead of every 3 days. I'll still receive IV fluids during both treatment sessions on the days I take Mepron and through the morning treatment the day after as I explained above. I'm happy to say it seems to be helping. To keep me from having to go through another grand mal seizure my anti-seizure medication was changed so that I am taking triple the amount. This medication is good in that you can take up to 3,000 mgs of it without major side effects. I had been taking only 300 mgs at bedtime. Now I take 300 mgs with breakfast, then before my afternoon IV treatment session, and continue with the 300 mgs at bedtime. Also, the decision was made for me to take one more Ativan pill daily. The IVs push the toxins around and you often feel a lot worse after treatment than you did before. I was taking 1 mg of Ativan with breakfast, another when I came home from morning treatment, another before afternoon treatment and then one at bedtime. Now I will be adding one more after my afternoon treatment to ward off seizures.
Then there were some new prescription medications added as well. Since I don't do well with codeine based pain killers (they cause more depression and can often cause constipation - sorry, but it's true), I am now trying an opiate based pain killer. The brand name is Darvon and I can take up to three a day. This has been a miracle drug for me as far as the constant pain is concerned. It doesn't take away all the pain - like the pain in my hands and feet - but it does allow me to sit in my treatment chair without wanting to cry out in pain.
The other prescription is an anti-parasitic drug (also used as an anti-malaria drug) that the doctor thinks I need. Apparently researchers are finding that people who have large biofilm communities in their blood tend to have parasites inside the biofilm. I am not sure if the parasites are causing the biofilm or just causing them to become much larger, but either way it isn't good. The doctor said most of her patients from the Southeast section of the country have a common parasite - of course I forgot the name of it - haha. Anyway, she said it's acquired by swimming in lakes, streams and rivers and swallowing water. Since I have swam in every body of water I can think of from lakes to rivers to rock quarries, I figure I probably have that parasite. Before I can start that medication though I have to go to the eye doctor first. One side effect of this oral medication is that it can often increase pressure in your retina (or cornea? - sorry my memory is shot & I'm doing good to type this much out - haha). So, the eye doctor will measure my eye pressure before I start the medication to get a "baseline reading" and will then recheck my pressure every so often to make sure it stays in a normal range.
Okay - last bit of news. I have broken up more biofilm - YAY ME :) Bad news is that this biofilm community unleashed another active round of Influenza A and Influenza B. That could also explain why I was trying to have another seizure. I think I wrote before that in immuno-compromised patients the flu can play some nasty tricks on the brain - seizures being one of the dreaded ones. So, boo for me having active Influenza A since before I got here and boo for having another active case of Influenza B since I had gotten rid of that in July, but remember, I have to get a lot worse before I can really get better. So even the bad news turns out to be the good news.
News from the non-medical front is that my chair mate and by now extremely close friend, Suz, will be leaving in 2 weeks. I am so very happy to see her headed home and that she can now switch to the oral treatment that isn't quite as hard on your brain. Orals are not easy at all, but when you take oral antibiotics AND IV antibiotics you can imagine how hard it can be on your body. So I am thrilled to see her make such progress and I know she will go on to do amazing things with her life. However, the selfish part of me will miss her tremendously. I thank God for sitting me next to Suz who has a huge, caring heart, who is amazingly creative capable of anything - drawings, paintings, handmade jewelry, photography, and really anything you can think of - she can do it. What I will miss the most is her wonderful sense of humor and her infectious laugh. I do love making her laugh and she makes me laugh just as much. Since we live only one building away from one another at our apartment complex we also spend a lot of time together outside of treatment. I am blessed beyond words to have met this beautiful person who showed me how to make the treatment clinic a place of laughter instead of tears. I cannot thank her enough for showing me the ropes and answering my myriad of questions about all things IV related!
As for me, we will be here through Christmas and will do some more re-testing in January to see what progress I'm making. I am no longer pushing for a "go home date" because I am beginning to truly understand just how sick I was when I got here. I have definitely learned that I can't speed this process up and that God is teaching me patience in ways I never thought possible. He is with me and He never lets go of my hand. I give all the glory and honor to Him for going before me in all things - for leading me to this doctor and this place of healing - for seating me next to girls that I love and pray for every day. I pray that the next person I sit next to has just one 1oth of the personality that Suz has, but even that is a tall order. She is simply her wonderful, unique, awe inspiring self and I love her more every day.
Okay, I may have forgotten some things about my doctor's meeting. I did get a 24 hour Holter monitor that I wore yesterday and today to track my heart fluctuations and I also got a very detailed echo-cardiogram done yesterday at the cardiologist's office so I will let you know if anything else pops up. For now I think God knows I'm just trying to handle the Babesia and the two strains of flu I have. I keep trusting in God and I keep finding that He is faithful to His promises and He never gives me more than I can bear.
This has been super long and I'm exhausted. I will close with this:
"O Lord, you are our Father. We are the clay, you are the potter; we are all the work of your hand." Isaiah 64:8
"It is good to praise the Lord and make music to your name, O Most high, to proclaim your love in the morning and your faithfulness at night." Psalm 92:1-2
God is working on me as a potter would shape a bowl. Once the shape is correct the bowl might go into the fire (or kiln) to harden - maybe I'm in the kiln right now? But I do know He will work on and in you if you ask for His help and trust in His word. I praise Him through all of this - even those dark and depressing days I praise Him for the little treasures He sends my way, like wonderful treatment friends who show me what strength, determination, and a positive outlook can overcome. I pray you all have friends like that or that you are that kind of friend to others.
Much love to you all -
K
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Emotions versus reason
I'm so emotional right now. Yes, it's after midnight and despite all of modern medicine's best attempts, I am not asleep. I'm crying. I'm crying and I've been crying off and on for about 3 hours. This is not the "normal me"...this is me on drugs - treatment drugs. This is me on IV and oral antibiotics with a brain that keeps wanting to go into seizure mode. This is me who cannot find peace because I let my mind go to the dark places and this is me who seems to find things to worry about. This is the worst version of me - the weak, tired, upset, frustrated, impatient, scared girl (yes, I am 34 and have yet to call myself a "woman"...sigh...we'll address that in therapy after this is all said and done I am sure).
In short, this is me trying to figure out my future, trying to see beyond right now and thinking that I can plan for all sorts of contingencies. But I cannot. If I focus on what is ahead, well, I miss what is happening now. Although what is happening now is no fun and I wish I could just skip right through the whole thing, it is a part of my life here on this earth. It is a part I must go through - whether or not I know the reason matters not.
So, basically this is me when I don't turn to God - instead I get myself all good and worked up, shed copious amounts of tears, imagine horrible scenarios for my future, cry to the point where I have no tears left, and then finally I realize that I wouldn't be so upset if I weren't trying to figure out "secret things". What do I mean by "secret things"? I mean my future. My future is a secret to me and to everyone around me. The only one who knows what my future holds is God. So, when I worry and stress over all the "bad things" that "could" happen instead of reaching for my Bible or just saying a prayer through my tears, I'm trying to control what is beyond my control. I'm stressing over "secret things" that belong only to God unless He decides to share them with me. So far in this journey I've only felt that God wanted me to come to this clinic and see this doctor. He hasn't informed me of the amount of time I will be here or how hard treatment will be or when I might possibly just get to go home and visit my friends and family. I just know that He told me to come here and that's what we did.
Tomorrow - wait scratch that since it's already after midnight - TODAY I have an appointment with my doctor. I will be in that meeting before my afternoon IV treatment session. Tomorrow I have an appointment with the cardiologist that my doctor works with. I wish I felt a little more sane, but it seems I lose my mind before these appointments. I've been losing my mind a lot lately. I've told you all how this new medication for the Babesia is causing me all sorts of trouble and although we've switched my IV treatment around that medication so I am getting just IV fluids every 3 and a half days, well, I still feel crazy. My brain still feels like a ticking time bomb wanting to have another seizure at the drop of a hat. However, with well timed meds I have been keeping that from happening. I will discuss all of this at the meeting of course. I don't know if switching off the IV antibiotics to IV fluids so often is causing me more problems than just being on straight IV antibiotics, but something has to give. I am going to see if it's possible that we stop treating the Babesia for now because I feel the treatment has made me feel worse than the Babesia itself did. However, since Babesia can cause a lack of oxygen (apparently due to red blood cells sticking together more???) then I may have to keep on treating it because it could be why my cardiac issues have been flaring. I don't know. I guess I will know more tomorrow.
So, please pray. My appointment is for 1:00 p.m. which usually means it will start closer to 2:00. Then tomorrow is Tuesday which is "blood draw day" for the side of the clinic my treatment room is located in so I will leave the meeting, walk to the lab to have my blood drawn, then head into the treatment room and start my 2 hour bag of IV antibiotics. Basically, I miss out on having much nap time in between treatments. It will be worse the next day when I go to the cardiologist because that appointment is at 11:00 a.m. Oh, and this will make my Lyme friends laugh. The cardiologist's receptionist called to remind me of my appointment and to tell me I need to bring ALL of my medication - prescription & supplements - to the appointment with me in their bottles. She has no idea what she's asking for...hahaha. I wonder if I should just use a garbage bag to get the point across that I am on many medications. Sad thing is that I need to be adding more this week. I need to be adding Vitamin D & K as well as Iodoral (which I believe helps my body use iodine more efficiently which assists the thyroid hormones - I think??) Of course I will just have to have my amount of IV Doxy, IV Heparin and IV Benadryl written out for them.
Okay. My point is this (yes, I do sometimes have a point) - worrying about all of this is getting me nowhere. Crying for 3 or so hours has gotten me nothing but a headache and a lack of sleep. When I felt that overwhelming out of control feeling hit I should have known to reach for the Bible. I should have known to call out to God. As soon as I picked up a book that has a lot of good scripture verses in it, I immediately came across these:
"Lean on, trust in, and be confident in the Lord with all your hear and mind and do not rely on your own insight or understanding. In all your ways know, recognize, and acknowledge Him, and He will direct and make straight and plain your paths." Proverbs 3:5-6 (Amplified Bible)
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34 (NIV)
So, had I just gone there first I bet I wouldn't have this headache. I know I would be asleep (well, I had to share this with you all first, so I might still be typing) and as the saying goes, "all would be right with the world." However, I failed to do that. The good thing is that God didn't allow me to wallow in my failure. He kept pressing on my heart until I turned to face Him. When you keep your eyes on Him, the rest of it just falls away. The worry washes off and a sense of calm surrounds you. This is not by my doing - it's what happens when you truly focus on God and allow Him to lead your thoughts. I was emotional and upset. He knew that. He also knew that I was worried about my future, about how long I'll be here, about the length of time I will have to feel this bad and He saw me trying to reason out what I would tell the doctor tomorrow. He then saw me get despondent about that appointment, deciding I did not even want to go and hear what news there might be. I went from overly emotional, to trying to reason with my mind, to finally feeling God push me towards the simple truth. I have nothing to worry about because He is with me. He has plans for me - "secret plans" - plans I will find out as I go about day by day putting my trust in Him.
So there - I'm not this strong pillar of faith. I'm a simple human being who fails miserably and will always fall short which is why I need the grace of God to help me through this life. I have never done a thing to earn that grace - no one could ever do enough to "earn God's grace". It is something He wants to give as part of His unconditional love for us. God is good and He is strong. He is the only sanity I seem to find in this journey. I am so grateful that He allows me to stumble, fall, and even fail and He still forgives my many mistakes and patiently waits while I remember just who He is and what He can do - He is the great "I am". He can do anything and I pray that His will be done in my life tomorrow during my meeting, the next day with the cardiologist, and the day after that, and the day after that, and every day that I am breathing and living on this earth I pray that I continue to hear His call and go to Him with my troubles instead of troubling myself with worry.
Much love to you all. Hope this wasn't a horrible ramble of an entry. Sometimes I just get started and keep on going. But now my hands are saying "STOP" because they hurt. So stop I will and I think I will close my eyes and sleep in the peace that can only come from God. Thank you Lord for all that you do and for all that you are. I hope you get to feel His presence in your life today. Be still - He will come to you if you ask Him.
In short, this is me trying to figure out my future, trying to see beyond right now and thinking that I can plan for all sorts of contingencies. But I cannot. If I focus on what is ahead, well, I miss what is happening now. Although what is happening now is no fun and I wish I could just skip right through the whole thing, it is a part of my life here on this earth. It is a part I must go through - whether or not I know the reason matters not.
So, basically this is me when I don't turn to God - instead I get myself all good and worked up, shed copious amounts of tears, imagine horrible scenarios for my future, cry to the point where I have no tears left, and then finally I realize that I wouldn't be so upset if I weren't trying to figure out "secret things". What do I mean by "secret things"? I mean my future. My future is a secret to me and to everyone around me. The only one who knows what my future holds is God. So, when I worry and stress over all the "bad things" that "could" happen instead of reaching for my Bible or just saying a prayer through my tears, I'm trying to control what is beyond my control. I'm stressing over "secret things" that belong only to God unless He decides to share them with me. So far in this journey I've only felt that God wanted me to come to this clinic and see this doctor. He hasn't informed me of the amount of time I will be here or how hard treatment will be or when I might possibly just get to go home and visit my friends and family. I just know that He told me to come here and that's what we did.
Tomorrow - wait scratch that since it's already after midnight - TODAY I have an appointment with my doctor. I will be in that meeting before my afternoon IV treatment session. Tomorrow I have an appointment with the cardiologist that my doctor works with. I wish I felt a little more sane, but it seems I lose my mind before these appointments. I've been losing my mind a lot lately. I've told you all how this new medication for the Babesia is causing me all sorts of trouble and although we've switched my IV treatment around that medication so I am getting just IV fluids every 3 and a half days, well, I still feel crazy. My brain still feels like a ticking time bomb wanting to have another seizure at the drop of a hat. However, with well timed meds I have been keeping that from happening. I will discuss all of this at the meeting of course. I don't know if switching off the IV antibiotics to IV fluids so often is causing me more problems than just being on straight IV antibiotics, but something has to give. I am going to see if it's possible that we stop treating the Babesia for now because I feel the treatment has made me feel worse than the Babesia itself did. However, since Babesia can cause a lack of oxygen (apparently due to red blood cells sticking together more???) then I may have to keep on treating it because it could be why my cardiac issues have been flaring. I don't know. I guess I will know more tomorrow.
So, please pray. My appointment is for 1:00 p.m. which usually means it will start closer to 2:00. Then tomorrow is Tuesday which is "blood draw day" for the side of the clinic my treatment room is located in so I will leave the meeting, walk to the lab to have my blood drawn, then head into the treatment room and start my 2 hour bag of IV antibiotics. Basically, I miss out on having much nap time in between treatments. It will be worse the next day when I go to the cardiologist because that appointment is at 11:00 a.m. Oh, and this will make my Lyme friends laugh. The cardiologist's receptionist called to remind me of my appointment and to tell me I need to bring ALL of my medication - prescription & supplements - to the appointment with me in their bottles. She has no idea what she's asking for...hahaha. I wonder if I should just use a garbage bag to get the point across that I am on many medications. Sad thing is that I need to be adding more this week. I need to be adding Vitamin D & K as well as Iodoral (which I believe helps my body use iodine more efficiently which assists the thyroid hormones - I think??) Of course I will just have to have my amount of IV Doxy, IV Heparin and IV Benadryl written out for them.
Okay. My point is this (yes, I do sometimes have a point) - worrying about all of this is getting me nowhere. Crying for 3 or so hours has gotten me nothing but a headache and a lack of sleep. When I felt that overwhelming out of control feeling hit I should have known to reach for the Bible. I should have known to call out to God. As soon as I picked up a book that has a lot of good scripture verses in it, I immediately came across these:
"Lean on, trust in, and be confident in the Lord with all your hear and mind and do not rely on your own insight or understanding. In all your ways know, recognize, and acknowledge Him, and He will direct and make straight and plain your paths." Proverbs 3:5-6 (Amplified Bible)
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34 (NIV)
So, had I just gone there first I bet I wouldn't have this headache. I know I would be asleep (well, I had to share this with you all first, so I might still be typing) and as the saying goes, "all would be right with the world." However, I failed to do that. The good thing is that God didn't allow me to wallow in my failure. He kept pressing on my heart until I turned to face Him. When you keep your eyes on Him, the rest of it just falls away. The worry washes off and a sense of calm surrounds you. This is not by my doing - it's what happens when you truly focus on God and allow Him to lead your thoughts. I was emotional and upset. He knew that. He also knew that I was worried about my future, about how long I'll be here, about the length of time I will have to feel this bad and He saw me trying to reason out what I would tell the doctor tomorrow. He then saw me get despondent about that appointment, deciding I did not even want to go and hear what news there might be. I went from overly emotional, to trying to reason with my mind, to finally feeling God push me towards the simple truth. I have nothing to worry about because He is with me. He has plans for me - "secret plans" - plans I will find out as I go about day by day putting my trust in Him.
So there - I'm not this strong pillar of faith. I'm a simple human being who fails miserably and will always fall short which is why I need the grace of God to help me through this life. I have never done a thing to earn that grace - no one could ever do enough to "earn God's grace". It is something He wants to give as part of His unconditional love for us. God is good and He is strong. He is the only sanity I seem to find in this journey. I am so grateful that He allows me to stumble, fall, and even fail and He still forgives my many mistakes and patiently waits while I remember just who He is and what He can do - He is the great "I am". He can do anything and I pray that His will be done in my life tomorrow during my meeting, the next day with the cardiologist, and the day after that, and the day after that, and every day that I am breathing and living on this earth I pray that I continue to hear His call and go to Him with my troubles instead of troubling myself with worry.
Much love to you all. Hope this wasn't a horrible ramble of an entry. Sometimes I just get started and keep on going. But now my hands are saying "STOP" because they hurt. So stop I will and I think I will close my eyes and sleep in the peace that can only come from God. Thank you Lord for all that you do and for all that you are. I hope you get to feel His presence in your life today. Be still - He will come to you if you ask Him.
Sunday, October 25, 2009
Days I wish I could forget...
I think sometimes people don't really grasp what all is going on with me because I HATE writing entries that are "downers". However, after much thought on the subject, I think I have to write the whole truth about how I'm doing right now. Why? Because I need the prayers.
The truth is that I am in constant pain. My hands hurt to the point where I really don't want to be on the computer often and sometimes I wear gloves inside the house and at treatment. My feet hurt to stand on and my knees don't always work well. I hurt more than I have in a long time. The doctor says this is good because it shows that the medications are killing the bacteria and the dead bacteria becomes toxic in your blood until it is flushed from your body. The toxins are what make your symptoms so much worse. It's called a "Herxheimer reaction" - might want to check my spelling on that one, but you can google it and probably get a decent definition. Anyway, it means that getting better means getting a lot worse first. I knew this coming into treatment and I accepted it then and I accept it now. It's just hard on me.
Yesterday right at the end of treatment my body started to show signs that it might be trying to have another seizure. My sweet nurses checked me over and gave me a shot of Ativan and more Heparin to help see if we could keep it "at bay" and we did. I had a lot of right side tremors but nothing close to the grand mal seizure I had a month or so ago. I am very thankful to God for making me say something to the nurses. I really hate to complain. I hate to "be sick" or "feel bad" in front of anyone. Is that insane? Probably. However, after 20+ years of doctors telling me I didn't have anything wrong and sometimes even my supposed "good friends" acting like I was being a hypochondriac - well, you end up with someone who hates hospitals and never wants to "act sick" for fear that people think I'm doing just that - "acting". The past few years we at least had doctors who would tell me there was something wrong with my immune system, or my heart, or my kidneys, but then they would tell me they weren't sure what it was. I'm afraid all of those times have left me "scarred but smarter" as the saying goes.
Anyway, I am not doing well physically or mentally and I am asking that you pray even more, if that's possible because I know how much everyone is already praying! I thought if I gave you an idea of what my "typical day" consists of, you may know how to pray more specifically. So here goes:
Mornings:
I wake up around 5:45 a.m. every day of the week and I want to cry because my body hurts so much but I don't have time. I have to get up and eat breakfast, take my medications, dress in heavy layers (most mornings over the past 3 weeks have been in the 30s & 40s). Mom (or M if it's his week here) drive me to treatment by 6:35. I get hooked up to my IV and sit in a chair that mocks all of my efforts to make it comfortable. I usually can't sit still very well because I hurt. By 9:00 I am back at the apartment taking more medications and trying to get at least 2 hours of sleep.
Afternoons:
I wake up and take more medication and try to eat lunch around 1:30 or 2:00 so it will be close to when I have to go to afternoon treatment. You don't want to go to treatment on an empty stomach because you will get nauseated and you may even throw up. I then try and find something warm and comfortable to wear because even if it's 70 degrees outside the air conditioning in my treatment room makes it around 60 degrees. Honestly, one day it was 56 degrees outside and the air conditioner still came on. Don't ask me - I just get treatment here. I get there around 3:00 and get home right before 6:00.
Evenings:
Once I'm at the apartment I may have to take some medications that are taken on an empty stomach then wait 30 minutes before eating dinner and taking the meds that I have to take with food. Now that I'm treating the Babesia one of my meds has to be taken 1 hour away from all other supplements and medications so 1 hour after I take my dinner pill I have to take this medication with 4-5 ounces of grapefruit juice. Then I have to wait another hour before I can take my bedtime medications. Sad to say that even with the Ativan, Valium and anti-seizure medications I am not sleeping well at all. I may fall asleep around 1:00 a.m. which gives me 5 hours before I start the whole cycle over again.
Now, that's my schedule time wise, but it doesn't really go into what all of this is doing to me physically or mentally. I am sure you can imagine I'm exhausted. IV antibiotics make your brain feel like jello - you can't think well or focus on much. Add to that the anti-anxiety medications, the IV Benadryl (this is given to help with Herx reactions so I wonder how bad things would be if I DID NOT take it), and the other oral antibiotics, the new antifungal medication for Babesia, the anti seizure drugs, etc., etc. - it all adds up to me having a short fuse and wanting to cry a lot.
But I try hard not to cry. Why? Because crying would only make my headaches worse and I still (yes, even after all of this) do not want to throw my own pity party. Maybe that's why I try so hard to only give the good news or spin things to show only the positive side? Or maybe it's because I still feel thankful to have made it here alive and to be receiving treatment at all. There was a good 4-6 week period before we got here that we weren't sure if my heart would keep on beating, that I would get here in time to be treated. I think I cut it close, but I had full faith in God's plan whether it included me getting treated or going on to heaven. I still have full faith in God's plan. Just because I am having a really hard time right now doesn't mean I doubt His plan in the least. God is good. I know this. I am thankful for every day I have even though so many of them are filled with uncontrollable pain and a sadness that seems to be sinking into the core of me. I think that's part of the process of treatment.
I think that God will use all of this to strengthen me mentally as well as physically. I also think God is trying to get me to open up more. To let other people in on what is truly going on here. While I love to lift people up, I think God is wanting me to see that it is not a sin to show your weaknesses and He's shown me I have plenty of those! I used to never like to think of my "shortcomings" but now I know that if I don't show those - if I don't allow you to see how terribly weak I really am - if I continue to let you think that I wake up every day excited to head to my next treatment session, well, I am stealing the glory that is meant for God. He is the one who gets me through every day. He is the one who is counting each and every tear I cry. He is the one who gives me just enough energy to be able to be somewhat upbeat while I am around the other patients in treatment. He allows me to make them laugh and helps me to perk them up. Then He continues to be with me as I go home from treatment physically exhausted and emotionally spent. He is with me all the time - this I know. He is in the darkest valleys and He is trying to tell me that all I need to do is stop trying to do it all myself and allow Him to carry me through this time. I think I have to take Him up on that offer, because honestly, if it were up to me I think I would have quit a long time ago.
This is the hardest thing I have ever done in my life and for a woman who has passed over 100 kidney stones - well, that says a lot. These are my "cave days" meaning like the days that David went into the caves to hide from Saul who wanted to kill him. David listened to God then and God brought him through those days. I am trying hard to listen only to God right now, but the side effects of the medications make that really hard most days. I pray that God makes His will so clear to me that there is no way I could mistake it for anything else. I know He is with me and He hurts for me. He hurts for all His children. However, I feel that coming through all of this will strengthen me in ways I can't imagine yet. I pray for His guidance to surround me and for me to bring His light to everyone I meet or see. I'm not the only one having "cave days" - there's a whole room of other patients who are going through the toughest time of their lives too. So pray for all of us.
These may be days I wish I could forget, but I know that the lessons I learn throughout this journey will be ones that I will cling to for the rest of my life.
I thank each one of you who takes the time to read these entries, who pray for me, who just think about me even. It means more than you will ever know and I am certain God has placed certain people in my life here, just as He has placed this blog in front of other certain people so that we all might pray for each other and find strength and comfort in Him.
I'll end with this verse from Isaiah:
"In returning and rest you shall be saved; in quietness and in trust shall be your strength." Isaiah 30:15 (from NRSV)
Much love to you all-
K
The truth is that I am in constant pain. My hands hurt to the point where I really don't want to be on the computer often and sometimes I wear gloves inside the house and at treatment. My feet hurt to stand on and my knees don't always work well. I hurt more than I have in a long time. The doctor says this is good because it shows that the medications are killing the bacteria and the dead bacteria becomes toxic in your blood until it is flushed from your body. The toxins are what make your symptoms so much worse. It's called a "Herxheimer reaction" - might want to check my spelling on that one, but you can google it and probably get a decent definition. Anyway, it means that getting better means getting a lot worse first. I knew this coming into treatment and I accepted it then and I accept it now. It's just hard on me.
Yesterday right at the end of treatment my body started to show signs that it might be trying to have another seizure. My sweet nurses checked me over and gave me a shot of Ativan and more Heparin to help see if we could keep it "at bay" and we did. I had a lot of right side tremors but nothing close to the grand mal seizure I had a month or so ago. I am very thankful to God for making me say something to the nurses. I really hate to complain. I hate to "be sick" or "feel bad" in front of anyone. Is that insane? Probably. However, after 20+ years of doctors telling me I didn't have anything wrong and sometimes even my supposed "good friends" acting like I was being a hypochondriac - well, you end up with someone who hates hospitals and never wants to "act sick" for fear that people think I'm doing just that - "acting". The past few years we at least had doctors who would tell me there was something wrong with my immune system, or my heart, or my kidneys, but then they would tell me they weren't sure what it was. I'm afraid all of those times have left me "scarred but smarter" as the saying goes.
Anyway, I am not doing well physically or mentally and I am asking that you pray even more, if that's possible because I know how much everyone is already praying! I thought if I gave you an idea of what my "typical day" consists of, you may know how to pray more specifically. So here goes:
Mornings:
I wake up around 5:45 a.m. every day of the week and I want to cry because my body hurts so much but I don't have time. I have to get up and eat breakfast, take my medications, dress in heavy layers (most mornings over the past 3 weeks have been in the 30s & 40s). Mom (or M if it's his week here) drive me to treatment by 6:35. I get hooked up to my IV and sit in a chair that mocks all of my efforts to make it comfortable. I usually can't sit still very well because I hurt. By 9:00 I am back at the apartment taking more medications and trying to get at least 2 hours of sleep.
Afternoons:
I wake up and take more medication and try to eat lunch around 1:30 or 2:00 so it will be close to when I have to go to afternoon treatment. You don't want to go to treatment on an empty stomach because you will get nauseated and you may even throw up. I then try and find something warm and comfortable to wear because even if it's 70 degrees outside the air conditioning in my treatment room makes it around 60 degrees. Honestly, one day it was 56 degrees outside and the air conditioner still came on. Don't ask me - I just get treatment here. I get there around 3:00 and get home right before 6:00.
Evenings:
Once I'm at the apartment I may have to take some medications that are taken on an empty stomach then wait 30 minutes before eating dinner and taking the meds that I have to take with food. Now that I'm treating the Babesia one of my meds has to be taken 1 hour away from all other supplements and medications so 1 hour after I take my dinner pill I have to take this medication with 4-5 ounces of grapefruit juice. Then I have to wait another hour before I can take my bedtime medications. Sad to say that even with the Ativan, Valium and anti-seizure medications I am not sleeping well at all. I may fall asleep around 1:00 a.m. which gives me 5 hours before I start the whole cycle over again.
Now, that's my schedule time wise, but it doesn't really go into what all of this is doing to me physically or mentally. I am sure you can imagine I'm exhausted. IV antibiotics make your brain feel like jello - you can't think well or focus on much. Add to that the anti-anxiety medications, the IV Benadryl (this is given to help with Herx reactions so I wonder how bad things would be if I DID NOT take it), and the other oral antibiotics, the new antifungal medication for Babesia, the anti seizure drugs, etc., etc. - it all adds up to me having a short fuse and wanting to cry a lot.
But I try hard not to cry. Why? Because crying would only make my headaches worse and I still (yes, even after all of this) do not want to throw my own pity party. Maybe that's why I try so hard to only give the good news or spin things to show only the positive side? Or maybe it's because I still feel thankful to have made it here alive and to be receiving treatment at all. There was a good 4-6 week period before we got here that we weren't sure if my heart would keep on beating, that I would get here in time to be treated. I think I cut it close, but I had full faith in God's plan whether it included me getting treated or going on to heaven. I still have full faith in God's plan. Just because I am having a really hard time right now doesn't mean I doubt His plan in the least. God is good. I know this. I am thankful for every day I have even though so many of them are filled with uncontrollable pain and a sadness that seems to be sinking into the core of me. I think that's part of the process of treatment.
I think that God will use all of this to strengthen me mentally as well as physically. I also think God is trying to get me to open up more. To let other people in on what is truly going on here. While I love to lift people up, I think God is wanting me to see that it is not a sin to show your weaknesses and He's shown me I have plenty of those! I used to never like to think of my "shortcomings" but now I know that if I don't show those - if I don't allow you to see how terribly weak I really am - if I continue to let you think that I wake up every day excited to head to my next treatment session, well, I am stealing the glory that is meant for God. He is the one who gets me through every day. He is the one who is counting each and every tear I cry. He is the one who gives me just enough energy to be able to be somewhat upbeat while I am around the other patients in treatment. He allows me to make them laugh and helps me to perk them up. Then He continues to be with me as I go home from treatment physically exhausted and emotionally spent. He is with me all the time - this I know. He is in the darkest valleys and He is trying to tell me that all I need to do is stop trying to do it all myself and allow Him to carry me through this time. I think I have to take Him up on that offer, because honestly, if it were up to me I think I would have quit a long time ago.
This is the hardest thing I have ever done in my life and for a woman who has passed over 100 kidney stones - well, that says a lot. These are my "cave days" meaning like the days that David went into the caves to hide from Saul who wanted to kill him. David listened to God then and God brought him through those days. I am trying hard to listen only to God right now, but the side effects of the medications make that really hard most days. I pray that God makes His will so clear to me that there is no way I could mistake it for anything else. I know He is with me and He hurts for me. He hurts for all His children. However, I feel that coming through all of this will strengthen me in ways I can't imagine yet. I pray for His guidance to surround me and for me to bring His light to everyone I meet or see. I'm not the only one having "cave days" - there's a whole room of other patients who are going through the toughest time of their lives too. So pray for all of us.
These may be days I wish I could forget, but I know that the lessons I learn throughout this journey will be ones that I will cling to for the rest of my life.
I thank each one of you who takes the time to read these entries, who pray for me, who just think about me even. It means more than you will ever know and I am certain God has placed certain people in my life here, just as He has placed this blog in front of other certain people so that we all might pray for each other and find strength and comfort in Him.
I'll end with this verse from Isaiah:
"In returning and rest you shall be saved; in quietness and in trust shall be your strength." Isaiah 30:15 (from NRSV)
Much love to you all-
K
Sunday, October 18, 2009
Changing up treatments...
I believe I've described a bit about the rage, anger, frustration, hysterical crying, etc. that seems to accompany the treatment for the Babesia. I may have even described about how, during one of my hysterical crying fits, I cried out to God to just let me die. That's a hard thought to fathom. The good thing is that I know it's not really MY thought. I know that all of this behavior is coming from a combination of the illnesses, the IVs, the other medications, etc. However, if I wasn't putting my full faith in God right now, I might think otherwise. I might believe those thoughts, the ones full of rage, hate, anger and sadness, were my very own thoughts and that would be awful. Instead, I know that nothing can steal the joy that God places in my heart. That doesn't mean Christians can't have "bad days" because we definitely can. It just means that if we truly have faith and believe in God, then we know that even the bad days can turn out for His good.
Going through the first two weeks of the Babesia treatment was testing my brain and my heart. I felt like I wasn't even talking to God and I wasn't sure what to say or pray to Him if I did. I was overcome with every awful emotion and I thought, "I just have to get through this. Once I'm through with the treatment for Babesia, I'll feel more myself again." Well, the treatment for Babesia is a drug called Mepron along with two supplements that help the Mepron stay in your system. I talked to one of my sweet treatment friends, I'll just call her "C", and she was having these intese feelings of rage and anger too. I immediately realized it was the medication we were on for the Babesia because if any of you knew "C" you would know that she is a precious, bubbly, sweetheart of a person who you would not even think capable of "thoughts of rage" - I do mean that in the best possible way. She is just a wonderful person. Even though I realized that we were both reacting to this medication, or perhaps how this medication works when mixed with all the other medications we're on, I still thought I should just ride it out. The doctor already had me taking the Mepron every 3rd day instead of every day like some patients. I wasn't sure there was much more that could be done to help me.
However, after having my husband arrive and crying hysterically and pitching a royal fit over how 3 different ice packs still didn't work to fit around my elbow - and of course throwing said ice packs to make sure the point got across, well, I knew I had to let the doctor know something HAD to be done. On Thursday morning I wrote a note to the doctor and by that afternoon the nurse came in and told me I would only be getting fluids (along with my IV Heparin and Benadryl) that afternoon. She said that they were changing my schedule so that on the days I take Mepron I will only get IV fluids instead of IV antibiotics during treatments. She also said the next morning after my day of Mepron I would get IV fluids only during my a.m. treatment and then get IV antibiotics that afternoon. The doctor does not want me to see this as a setback because honestly, my body couldn't have been healing while I was crying hysterically every other day or so. But, it's still hard to realize that out of the 14 IV treatments I get (2 times a day, 7 days a week) only 8 of them will have antibiotics. The reason I will go in for just the fluids (outside of the fact that it helps to keep me on schedule with my Heparin and I need the Benadryl to help with my "herx" reactions) is that the doctor wants to help push the toxins out that will be in my blood from killing off the Babesia. Not to mention that I tend to stay dehydrated when I'm off IVs.
Friday I had IV fluids only and yesterday I had IV fluids in the morning and IV antibiotics in the afternoon. Sunday, today, I will have IV antibiotics in both my morning and afternoon treatment sessions. So far I think I can already feel a difference. I feel more "myself" and while I know that I can still get upset and angry, I don't feel like it's as severe as it was. I hope this schedule really helps me keep calm or at least keep me from acting like a raving lunatic!
I must say that even though I felt like God was so far away from me - especially when I was in a rage - He never left me. One of the wonderful patients here is a missionary and author who gave me a copy of her book on CD. It's called "Jesus Calling" and it's a wonderful book. At times when I could not focus my eyes to read or when I couldn't calm down enough to even think of opening a book, I pushed play on my CD player and listened to her book. I love how she used scripture to back up everything in her book, but how she was able to write it as if Jesus were talking just to you. It was the best thing I found to help calm me down and I'm not sure how I would have gotten through those 2 weeks without it. I must have listened to those 7 CDs 2 or 3 times each. So, God made sure that even when my brain was betraying me, He was there keeping me from going absolutely crazy, He was there letting me know that those were not my thoughts, those were not my ideas.
Now I'm beginning to realize what people mean when they speak about the devil taking advantage of any weakness you have. I think the devil took full advantage of how my brain was working and planted horrible thoughts in my head causing me to struggle to just make it through every single day. The devil is like the school bully who kicks you when you're down. He wants to steal every happiness from you, but he REALLY wants to keep you from praising God. I must admit for awhile he was doing a good job at that. The devil kept me off the computer, kept me from posting anything to you all, kept me feeling sorry for myself and made sure my thoughts were occupied by how I felt and not at all focused on how other people felt. In fact, I had to remind myself several times that the devil can only steal your joy if you allow him to do so and if you don't stop him. I called out to God many times asking that he keep the devil from me and protect my thoughts. So, it's fitting that the book I'm currently reading is "Reverse the Devil's Decision" by Mike Purkey who's been a pastor for 30 years. He writes a lot about how the devil's decision is to steal away your joy, happiness, friends, health, basically anything God would want to bless you with, the devil wants to take from you. I feel like he is writing about what my head and my heart have been through over the past 2 weeks - the utter chaos that the devil can cause in your life if you don't recognize his schemes and lies.
I think the past two weeks could have been so much worse if I didn't have so many wonderful people praying for me. I have gotten the sweetest cards and notes and little gifts and I am truly thankful to each one of you who keeps on praying for me, even though these treatments are lasting far longer than I wanted. I know God has placed me here for a purpose - to regain my health and to let everyone I can know that I will praise His name no matter what I am going through. In fact, praising Him is the only way to get through some of this - just by keeping my eyes focused on Him and taking it day by day. I cannot worry about the future because that is not what God wants me to do. He simply asks that I step out in faith every day and know that He has promised to provide me with what I need for that day. I am trying to do that every day and with some of these medications it's hard to do, but it's not impossible. I may fail miserably one day, but thankfully God keeps giving me another day to try again.
I'll close this long post with these verses:
"The fruit of the Spirit is love, joy, peace, patience, kindness, generosity, faithfulness, gentleness, and self-control." Galatians 5:22-23 (NRSV)
"Faith is the assurance of things hoped for, the conviction of things not seen." Hebrews 11:1 (NRSV)
Thank you all for keeping up with me and for your steadfast prayers and love. I hope you all have a great week and I hope to write with more good news later on!!!
Much love-
K
Going through the first two weeks of the Babesia treatment was testing my brain and my heart. I felt like I wasn't even talking to God and I wasn't sure what to say or pray to Him if I did. I was overcome with every awful emotion and I thought, "I just have to get through this. Once I'm through with the treatment for Babesia, I'll feel more myself again." Well, the treatment for Babesia is a drug called Mepron along with two supplements that help the Mepron stay in your system. I talked to one of my sweet treatment friends, I'll just call her "C", and she was having these intese feelings of rage and anger too. I immediately realized it was the medication we were on for the Babesia because if any of you knew "C" you would know that she is a precious, bubbly, sweetheart of a person who you would not even think capable of "thoughts of rage" - I do mean that in the best possible way. She is just a wonderful person. Even though I realized that we were both reacting to this medication, or perhaps how this medication works when mixed with all the other medications we're on, I still thought I should just ride it out. The doctor already had me taking the Mepron every 3rd day instead of every day like some patients. I wasn't sure there was much more that could be done to help me.
However, after having my husband arrive and crying hysterically and pitching a royal fit over how 3 different ice packs still didn't work to fit around my elbow - and of course throwing said ice packs to make sure the point got across, well, I knew I had to let the doctor know something HAD to be done. On Thursday morning I wrote a note to the doctor and by that afternoon the nurse came in and told me I would only be getting fluids (along with my IV Heparin and Benadryl) that afternoon. She said that they were changing my schedule so that on the days I take Mepron I will only get IV fluids instead of IV antibiotics during treatments. She also said the next morning after my day of Mepron I would get IV fluids only during my a.m. treatment and then get IV antibiotics that afternoon. The doctor does not want me to see this as a setback because honestly, my body couldn't have been healing while I was crying hysterically every other day or so. But, it's still hard to realize that out of the 14 IV treatments I get (2 times a day, 7 days a week) only 8 of them will have antibiotics. The reason I will go in for just the fluids (outside of the fact that it helps to keep me on schedule with my Heparin and I need the Benadryl to help with my "herx" reactions) is that the doctor wants to help push the toxins out that will be in my blood from killing off the Babesia. Not to mention that I tend to stay dehydrated when I'm off IVs.
Friday I had IV fluids only and yesterday I had IV fluids in the morning and IV antibiotics in the afternoon. Sunday, today, I will have IV antibiotics in both my morning and afternoon treatment sessions. So far I think I can already feel a difference. I feel more "myself" and while I know that I can still get upset and angry, I don't feel like it's as severe as it was. I hope this schedule really helps me keep calm or at least keep me from acting like a raving lunatic!
I must say that even though I felt like God was so far away from me - especially when I was in a rage - He never left me. One of the wonderful patients here is a missionary and author who gave me a copy of her book on CD. It's called "Jesus Calling" and it's a wonderful book. At times when I could not focus my eyes to read or when I couldn't calm down enough to even think of opening a book, I pushed play on my CD player and listened to her book. I love how she used scripture to back up everything in her book, but how she was able to write it as if Jesus were talking just to you. It was the best thing I found to help calm me down and I'm not sure how I would have gotten through those 2 weeks without it. I must have listened to those 7 CDs 2 or 3 times each. So, God made sure that even when my brain was betraying me, He was there keeping me from going absolutely crazy, He was there letting me know that those were not my thoughts, those were not my ideas.
Now I'm beginning to realize what people mean when they speak about the devil taking advantage of any weakness you have. I think the devil took full advantage of how my brain was working and planted horrible thoughts in my head causing me to struggle to just make it through every single day. The devil is like the school bully who kicks you when you're down. He wants to steal every happiness from you, but he REALLY wants to keep you from praising God. I must admit for awhile he was doing a good job at that. The devil kept me off the computer, kept me from posting anything to you all, kept me feeling sorry for myself and made sure my thoughts were occupied by how I felt and not at all focused on how other people felt. In fact, I had to remind myself several times that the devil can only steal your joy if you allow him to do so and if you don't stop him. I called out to God many times asking that he keep the devil from me and protect my thoughts. So, it's fitting that the book I'm currently reading is "Reverse the Devil's Decision" by Mike Purkey who's been a pastor for 30 years. He writes a lot about how the devil's decision is to steal away your joy, happiness, friends, health, basically anything God would want to bless you with, the devil wants to take from you. I feel like he is writing about what my head and my heart have been through over the past 2 weeks - the utter chaos that the devil can cause in your life if you don't recognize his schemes and lies.
I think the past two weeks could have been so much worse if I didn't have so many wonderful people praying for me. I have gotten the sweetest cards and notes and little gifts and I am truly thankful to each one of you who keeps on praying for me, even though these treatments are lasting far longer than I wanted. I know God has placed me here for a purpose - to regain my health and to let everyone I can know that I will praise His name no matter what I am going through. In fact, praising Him is the only way to get through some of this - just by keeping my eyes focused on Him and taking it day by day. I cannot worry about the future because that is not what God wants me to do. He simply asks that I step out in faith every day and know that He has promised to provide me with what I need for that day. I am trying to do that every day and with some of these medications it's hard to do, but it's not impossible. I may fail miserably one day, but thankfully God keeps giving me another day to try again.
I'll close this long post with these verses:
"The fruit of the Spirit is love, joy, peace, patience, kindness, generosity, faithfulness, gentleness, and self-control." Galatians 5:22-23 (NRSV)
"Faith is the assurance of things hoped for, the conviction of things not seen." Hebrews 11:1 (NRSV)
Thank you all for keeping up with me and for your steadfast prayers and love. I hope you all have a great week and I hope to write with more good news later on!!!
Much love-
K
Sunday, October 11, 2009
Consequences of rage...
Well, this is just a entry to let you all know that the medication to treat the Babesia seems to make the Babesia symptoms worse...so yay (I do wish someone would create a special "sarcasm font"). Anyway, I had a fit of rage hit me so hard and so fast and, sadly, my computer became a victim and is now living in laptop heaven. I am so upset that I acted like a 4 year old and broke an expensive computer, however, I've been told by other patients here that actions like that are typical. The scary part to me is that it happened so fast I didn't even know what was going on until it was over.
I say that to inform you that I'm having to type this on my friend's computer during treatment. My very understanding husband has ordered me another laptop & honestly, I'm coming out better because the old one weighed too much for me to carry it to treatment often. I usually just borrow my friend's MacBook Air when she naps. However, the new one is only 3 lbs so I am hoping it will be much easier for me to lift.
Until then, dear readers, I will not be posting often. OH - and I cannot get my email either for those of you who email me. I can get onto facebook on my phone, but it gets frustrating. We hope the new one will be here within a week, but aren't sure.
Just pray that God gives me peace to replace this anger. This behavior is so foreign to who I am normally and I really hate experiencing these out of control emotions. I pray you are all having a good Sunday and will update when the new laptop arrives.
Much love-
K
I say that to inform you that I'm having to type this on my friend's computer during treatment. My very understanding husband has ordered me another laptop & honestly, I'm coming out better because the old one weighed too much for me to carry it to treatment often. I usually just borrow my friend's MacBook Air when she naps. However, the new one is only 3 lbs so I am hoping it will be much easier for me to lift.
Until then, dear readers, I will not be posting often. OH - and I cannot get my email either for those of you who email me. I can get onto facebook on my phone, but it gets frustrating. We hope the new one will be here within a week, but aren't sure.
Just pray that God gives me peace to replace this anger. This behavior is so foreign to who I am normally and I really hate experiencing these out of control emotions. I pray you are all having a good Sunday and will update when the new laptop arrives.
Much love-
K
Thursday, October 8, 2009
Trying hard to keep it together...
So, I started the 3 medications to treat the Babesia (another of the Lyme co-infections) on Sunday. It's a hard system because I'm only taking the prescription medication every 3 days. We all know now that my body cannot handle doing this kind of thing every single day. There are two supplements that go with the prescription to help your body keep it in your system longer so it can fight all that nasty Babesia. Bad thing is that the prescription has to be taken at 12 hour intervals and must be taken with "fatty foods & proteins" which I don't digest well still. I'm eating sausage patties with a couple of biscuits for breakfast and then eating a fatty/protein dinner on the days I take the prescription. However, while one of the supplements that goes with it is easy to take (just take a pill with breakfast & lunch every day) the other supplement is to be taken the day before I take the prescription medication and then again the next day when I take the prescription medication. That one is the hardest because it cannot be taken within an hour of ANY OTHER MEDICATIONS - that includes IV meds. So, finding a way to fit into the medication schedule was tough, but we've done it. I also have to take it with 4 ounces of grapefruit juice which I don't like, but I'm doing whatever is asked of me to get well!!!
I do need some prayers though because these medications have really caused me to deal with some depression. The doctor also says I'm "herxing" which is the term used when you kill off some of the bacteria and viruses and they are basically toxins in your bloodstream until they get filtered out. A "herx" means you will feel worse physically and even mentally sometimes. I haven't been pain free in so long that I don't think I would know what to do if I woke up that way so I can't use my pain (bone/joint pain) as an indicator for when I am "herxing". However, I have found that I can definitely tell by my moods. I get extremely depressed. I start questioning if this will ever end. I wonder if I shouldn't just pack the car up & go home. Worst of all, I can get so low that I pray to God to just take me on home to heaven. The good thing is that I recognize that these thoughts aren't really coming from my brain - they are coming from the "herx", sometimes they come from side effects of the meds, and sometimes they come because IV antibiotics twice daily turns your brain into mush.
I know that the devil comes to us when we are at our weakest - whether it is physically or mentally. I know that the devil uses my depression to put all kinds of horrible thoughts in my head and he wants to take away my will to fight. Mainly though, if he can't take away my will to fight, he definitely wants to stop me from praising God during my down times. But I won't do it. It's hard some days to wake up and say, "I'm going to start singing praises to my Lord and Savior right now!" But, as I start to recognize these "evil thoughts" I listen more closely to hear God's word. I am blessed to have treatment friends that are true believers and who lift me up on those days and remind me that God's plan might include me going through this rough time, but He has great plans for me when I reach the end of this dark tunnel. I trust His plans. Even in the midst of my confusion, even when I may say aloud, "Dear Lord, WHAT DO YOU WANT?", even though I might cry and weep for the life I think I am "supposed to have" as opposed to my current one, if I can be quiet long enough...God speaks to me. He reassures me of His love and His faithfulness. He reminds me of the promises written about in the Bible and how I am one of His many children and therefore, I too will benefit from those wonderful promises.
Okay, so now you know to pray for my mental attitude to be strong and pray that I resist the temptation to think God has forgotten me - not only has He not forgotten me, He has never left my side during this entire ordeal. I only have to be silent and still and feel His Holy Spirit within me leading my brain to brighter thoughts and moods. The trick is to keep me quiet for that long - haha!
Now, I figure I haven't posted any pictures on here for awhile (I tend to post on facebook faster than on here!) so here are some that my treatment seatmate (and by now my very close friend, Suz) and I took after morning treatment. Mind you this was before I started the Babesia treatment so I look really happy - ha! Of course, I don't think I know how to NOT smile when there's a camera around. OH - and by the way - it was 36 degrees one morning this week when I was leaving for treatment and only in the 40s when I was picked up 2 hours later!! This weekend the highs are only supposed to be in the 40s and lower 50s. I wanted to let you know that before you thought, "Why is K all bundled up in these pictures?" Well, I'll tell you why - because Missouri is not Alabama, they don't mess around with any Indian summer!!!
Oh & today's calendar verse goes right along with what I already wrote:
"You know with all your heart and soul that not one of all the good promises the Lord your God gave you has failed." Joshua 23:14
So here are a couple of pics:
First one is me pushing the Benadryl syringe into my IV line. Benadryl helps with the herxes and mainly helps me to be able to nap just a little during the day. I'm not as lucky as some people who can sleep during treatment! I pray one day I'll be able to do that!
The next is one I took of me & Suz right before we left morning treatment. Oh & yes, I am wearing a hat & scarf INSIDE. The hat hides my dirty hair, but also helps keep me warm. I was wearing fuzzy lined suede boots, a long sleeve t-shirt, a short sleeve t-shirt over that and a long cardigan sweater/coat along with the cozy scarf AND had a down comforter on top of me along with a space heater near my feet. Yet, I still come home freezing!!! Hopefully when my blood levels get to the normal ranges I won't stay so cold!
And don't be fooled by Suz's t-shirt, she was also wearing boots, a hat, and had just taken her sweater jacket off. She has now purchased a beautiful blue scarf and wears it to treatment because I told her how warm mine kept me!
I thank God everyday for this gift of an amazing friend during one of, well, scratch that - THE roughest times of my life. It was no coincidence that we were seated next to one another and that we are both from the same town in Alabama!!! God granted me a wonderfully funny and very talented friend in Suz and I am again humbled by His constant goodness, and how He goes before me in ALL things. Oh, and our houses in Alabama are only about 7 minutes away from one another! No, there's no coincidence in that at all. Thank you Lord for all my wonderful treatment friends. Hopefully I'll feel like taking pictures again one day soon and I'll get some of my other "war buddies" otherwise known as my treatment friends!!!
Much love to you all-
K
Saturday, October 3, 2009
Soul cleansing and silence...
I wish I were able to write more often on here. However, I am so tired and I sometimes feel that when I write then, I'm not communicating what God wants me to communicate.
I'll start with the health news. Basically I'm having a really hard time physically because of the flu and the Babesia. My joints hurt, my muscles ache, and my hands and feet are in constant pain it seems. In the mornings they hurt the worst and I wake up with my knuckles swollen and even have a hard time in the beginning of treatment pushing the syringes of Heparin and Benadryl into my PICC line. However, those are things I can deal with. They aren't fun, but they aren't sheer misery either.
My mental state is up and down though. Some days I'll be feeling really good only to find myself ready to cry 5 minutes later. This can be caused by many things. First, treatment is just hard and it is especially hard on a body that was already wearing itself out. Second, the flu brings with it a slight fever and I can get weepy with fevers (which I hate) and the Babesia makes my mood swings all but impossible to predict! Third and last, but perhaps the most important of all, is that I'm in a place with many very ill patients. This can cause me heartache because there are some amazing people here with such awesome fighting spirits! They show me every day the meaning of true inner strength and they are usually the same people who glorify God and praise Him in the midst of their immense physical problems. Then there are some people who seem to only focus on how bad they feel or how they feel so much worse than the other patients. Some like to think their suffering is so much greater or more important than the suffering of others. I feel the need to explain here that Lyme (and its many co-infections) attack the brain in several ways. So, a lot of people honestly don't have control over their brains (lack of neurotransmitters that help ward off depression is common and one of the big symptoms with a lot of these infections is rage and anger). They can't seem to help the anger and bitterness they feel. However, I do believe that if they were willing and trusted God with their problems that He could save them from those thoughts, or He may even help them rid their brain of those types of thoughts entirely - He's God, He can do anything!
When I see that negative behavior in someone, my first thought is of how sad I feel for them because it must be a miserable life to live when all you focus on is your sickness or your pain. By focusing on all the negatives these people really end up just causing themselves even more grief and suffering. I have to pray and ask God to help change my outlook or my mood so that I can be positive rather than allowing myself to wallow in misery, crying out about how unfair all of this is. I have to make a conscious choice to get God to help me change how I feel so I can focus on the good instead of the bad. I always try to be positive at the clinic because I love to be around other people and it makes my day if I can make someone smile or laugh. I feel like the best gift I have received from my chronic illness is all the "down time" I had to really take a deep look at what kind of person I was versus what kind of person I wanted to become. It's hard when you don't feel well, when you hurt, or when you're simply just exhausted to think that you have the energy or ability to change who you are inside, but it's not difficult if you ask God to grant you the strength to do so. You have to ask for His strength because our human strength isn't enough. I have to allow God to help me with my attitude and temperament. I hope that I am able to help others see that God, not me, is responsible for my positive attitude and my ability to joke through the hard times. I want to encourage other people and try to make them laugh because I think the more we look at all the joy we DO have in our lives, the less we see the problems in our lives because we are refocusing our view.
Paul wrote in Philippians that we are to present our requests to God with prayer and thanksgiving. I've found that beginning prayer by thanking God for the many wonderful things that I have in my life often reassures me of His constant presence. It allows me to see that He has gone before me and taken care of problems that I didn't even know to pray about. It convinces me that He is making the trail for my life and if I listen to Him, and Him alone, I will be happy and joyful despite the twists and turns that He may have put in my life's trail. Notice I didn't say that if I listen to Him alone my life will be problem-free, because that just isn't what happens. This world is full of problems and we will have to go through times of trouble, but He is with us every step of the way. He will NOT give us more than we can bear. He does not work like that. God is good in every sense of the word. He's more than good (at least in our human understanding of that word) - He is LOVE. He is simply unfathomable, unconditional love.
Now, some of the people I meet here are seem more interested in being sick than getting well. I think it's because they have usually been sick for as long as they can remember and they aren't sure what their lives will be like "after" - it sounds strange, but all change is hard. Even change that sounds like it should be so very positive. People just get used to their version of "normal". You don't know how much my heart hurts for them. I can't imagine being in that mindset, but like I said, these infections often make a lot of changes to your brain. I pray for them, I try to show them that just because you're sick doesn't mean that you can't laugh or have joy in your life. Yet, sometimes those people don't want to hear about joy because they are too fixated on the pain, the physical struggles of being ill. I can understand that in some ways because you do have to work to get past your pain. You have to consciously work to be positive in this place - you have to want to get well in order to get well. It's just that simple.
So, there are some people who I just can't reach, or at least at the moment I feel that I am failing at reaching them. God has work left to do in them before He can use me to explain how happiness is not some unattainable goal for the chronically ill. I want to share this message and I want to see it change lives. However, God is telling me that while I may be granted the gift of seeing some people's attitudes change, He also says I may only get to plant the seed, I may never see it grow into a fruitful tree. But I like to think I am planting as many seeds as possible while I'm here.
I also feel like God is trying to teach me that I am not always supposed plant these seeds with words. God is also teaching me about silence. About my being silent when often times I would just keep on talking. I'm trying to learn how to be silent so that I may better hear His words and His will for me. In the book I seem to quote all the time "100 Days In The Secret Place" I found this writing from the 1600s:
"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inward silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give." Archbishop Fenelon of France
So, some days I try to just be quiet and still and feel His presence. I know this experience isn't just a time for me to regain a healthy body, it's a time for me to regain a healthy mind and learn how to trust God with every ounce of my being. I've said many times that I had to be stripped of so many things before I was able to truly listen to God and understand how important it was to develop a much deeper relationship with Him. He's using this process to "cleanse my soul" as described by Michael Molinos in his writings from the 1600s (also quoted from the book "100 Days In The Secret Place"):
"There are two ways for the soul to be cleansed. The first is through affliction, anguish, distress, and inward torment. The second is through the fire of a burning love, a love impatient and hungry.
It is true that sometimes the Lord uses both of these ways to deal with our souls. ALL revelation and insight into God, all true experiential knowledge of God, ARISES FROM SUFFERING, which is the truest proof of love.
Oh, how I hope and wish for you that you can understand the great good that comes from tribulation. Tribulation cleanses the soul. The cleansing of the soul through tribulation is what produces patience.
Within tribulation can come inflamed prayer.
In the midst of tribulation we can exercise the most sublime acts of love and charity. To rejoice in the midst of tribulation brings us near to God. It is tribulation which annihilates and refines. It is that which takes the earthen and transforms it to the heavenly. Out of the human it brings forth the divine...transforming one and bringing it to the other, uniting them with the Lord.
Oh Christian, if you would know how to be CONSTANT in the fire of tribulation and QUIET in the first of tribulation, to be washed with the waters of affliction, then you would discover just how soon divine goodness would make its throne in your soul. There, in that good habitation, God would be able to refresh and solace Himself." - Michael Molinos
So you see, even if I cannot see past the pain some days, I can at least see what God is teaching me through the pain. I can see how the pain and suffering will help me better understand others' pain and like Paul wrote in 2 Corinthians 1:3-4, "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
I'm trying to use this time to learn as much as possible about myself, about dealing with others who are suffering, and most importantly, about trying to spread God's love and joy to everyone I come across. Some days I fail miserably and I go home feeling sad because I spoke without first asking God to speak through me, or I allowed my own "bad day" to cross over to someone else's day which just spreads the "blahs" around to others. However, God is teaching me every day how to lean on Him for words, deeds and definitely for attitude. I strive to show God's love through my words, my actions, and hopefully even through my attitude.
"But grow in the grace and knowledge of our Lord and Savior Jesus Christ. To him be glory both now and forever! Amen." 2 Peter 3:18
"Jesus looked at them and said, 'With man this is impossible, but with God all things are possible.'" Matthew 19:26
Thank you all again for reading my ramblings and most of all for continuing to keep me in your prayers. I hope to get well so I can go around and tell people about the amazing ways God used His people and their prayers to heal me. I hope you all have wonderful weekends!
Much love-
K
I'll start with the health news. Basically I'm having a really hard time physically because of the flu and the Babesia. My joints hurt, my muscles ache, and my hands and feet are in constant pain it seems. In the mornings they hurt the worst and I wake up with my knuckles swollen and even have a hard time in the beginning of treatment pushing the syringes of Heparin and Benadryl into my PICC line. However, those are things I can deal with. They aren't fun, but they aren't sheer misery either.
My mental state is up and down though. Some days I'll be feeling really good only to find myself ready to cry 5 minutes later. This can be caused by many things. First, treatment is just hard and it is especially hard on a body that was already wearing itself out. Second, the flu brings with it a slight fever and I can get weepy with fevers (which I hate) and the Babesia makes my mood swings all but impossible to predict! Third and last, but perhaps the most important of all, is that I'm in a place with many very ill patients. This can cause me heartache because there are some amazing people here with such awesome fighting spirits! They show me every day the meaning of true inner strength and they are usually the same people who glorify God and praise Him in the midst of their immense physical problems. Then there are some people who seem to only focus on how bad they feel or how they feel so much worse than the other patients. Some like to think their suffering is so much greater or more important than the suffering of others. I feel the need to explain here that Lyme (and its many co-infections) attack the brain in several ways. So, a lot of people honestly don't have control over their brains (lack of neurotransmitters that help ward off depression is common and one of the big symptoms with a lot of these infections is rage and anger). They can't seem to help the anger and bitterness they feel. However, I do believe that if they were willing and trusted God with their problems that He could save them from those thoughts, or He may even help them rid their brain of those types of thoughts entirely - He's God, He can do anything!
When I see that negative behavior in someone, my first thought is of how sad I feel for them because it must be a miserable life to live when all you focus on is your sickness or your pain. By focusing on all the negatives these people really end up just causing themselves even more grief and suffering. I have to pray and ask God to help change my outlook or my mood so that I can be positive rather than allowing myself to wallow in misery, crying out about how unfair all of this is. I have to make a conscious choice to get God to help me change how I feel so I can focus on the good instead of the bad. I always try to be positive at the clinic because I love to be around other people and it makes my day if I can make someone smile or laugh. I feel like the best gift I have received from my chronic illness is all the "down time" I had to really take a deep look at what kind of person I was versus what kind of person I wanted to become. It's hard when you don't feel well, when you hurt, or when you're simply just exhausted to think that you have the energy or ability to change who you are inside, but it's not difficult if you ask God to grant you the strength to do so. You have to ask for His strength because our human strength isn't enough. I have to allow God to help me with my attitude and temperament. I hope that I am able to help others see that God, not me, is responsible for my positive attitude and my ability to joke through the hard times. I want to encourage other people and try to make them laugh because I think the more we look at all the joy we DO have in our lives, the less we see the problems in our lives because we are refocusing our view.
Paul wrote in Philippians that we are to present our requests to God with prayer and thanksgiving. I've found that beginning prayer by thanking God for the many wonderful things that I have in my life often reassures me of His constant presence. It allows me to see that He has gone before me and taken care of problems that I didn't even know to pray about. It convinces me that He is making the trail for my life and if I listen to Him, and Him alone, I will be happy and joyful despite the twists and turns that He may have put in my life's trail. Notice I didn't say that if I listen to Him alone my life will be problem-free, because that just isn't what happens. This world is full of problems and we will have to go through times of trouble, but He is with us every step of the way. He will NOT give us more than we can bear. He does not work like that. God is good in every sense of the word. He's more than good (at least in our human understanding of that word) - He is LOVE. He is simply unfathomable, unconditional love.
Now, some of the people I meet here are seem more interested in being sick than getting well. I think it's because they have usually been sick for as long as they can remember and they aren't sure what their lives will be like "after" - it sounds strange, but all change is hard. Even change that sounds like it should be so very positive. People just get used to their version of "normal". You don't know how much my heart hurts for them. I can't imagine being in that mindset, but like I said, these infections often make a lot of changes to your brain. I pray for them, I try to show them that just because you're sick doesn't mean that you can't laugh or have joy in your life. Yet, sometimes those people don't want to hear about joy because they are too fixated on the pain, the physical struggles of being ill. I can understand that in some ways because you do have to work to get past your pain. You have to consciously work to be positive in this place - you have to want to get well in order to get well. It's just that simple.
So, there are some people who I just can't reach, or at least at the moment I feel that I am failing at reaching them. God has work left to do in them before He can use me to explain how happiness is not some unattainable goal for the chronically ill. I want to share this message and I want to see it change lives. However, God is telling me that while I may be granted the gift of seeing some people's attitudes change, He also says I may only get to plant the seed, I may never see it grow into a fruitful tree. But I like to think I am planting as many seeds as possible while I'm here.
I also feel like God is trying to teach me that I am not always supposed plant these seeds with words. God is also teaching me about silence. About my being silent when often times I would just keep on talking. I'm trying to learn how to be silent so that I may better hear His words and His will for me. In the book I seem to quote all the time "100 Days In The Secret Place" I found this writing from the 1600s:
"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inward silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give." Archbishop Fenelon of France
So, some days I try to just be quiet and still and feel His presence. I know this experience isn't just a time for me to regain a healthy body, it's a time for me to regain a healthy mind and learn how to trust God with every ounce of my being. I've said many times that I had to be stripped of so many things before I was able to truly listen to God and understand how important it was to develop a much deeper relationship with Him. He's using this process to "cleanse my soul" as described by Michael Molinos in his writings from the 1600s (also quoted from the book "100 Days In The Secret Place"):
"There are two ways for the soul to be cleansed. The first is through affliction, anguish, distress, and inward torment. The second is through the fire of a burning love, a love impatient and hungry.
It is true that sometimes the Lord uses both of these ways to deal with our souls. ALL revelation and insight into God, all true experiential knowledge of God, ARISES FROM SUFFERING, which is the truest proof of love.
Oh, how I hope and wish for you that you can understand the great good that comes from tribulation. Tribulation cleanses the soul. The cleansing of the soul through tribulation is what produces patience.
Within tribulation can come inflamed prayer.
In the midst of tribulation we can exercise the most sublime acts of love and charity. To rejoice in the midst of tribulation brings us near to God. It is tribulation which annihilates and refines. It is that which takes the earthen and transforms it to the heavenly. Out of the human it brings forth the divine...transforming one and bringing it to the other, uniting them with the Lord.
Oh Christian, if you would know how to be CONSTANT in the fire of tribulation and QUIET in the first of tribulation, to be washed with the waters of affliction, then you would discover just how soon divine goodness would make its throne in your soul. There, in that good habitation, God would be able to refresh and solace Himself." - Michael Molinos
So you see, even if I cannot see past the pain some days, I can at least see what God is teaching me through the pain. I can see how the pain and suffering will help me better understand others' pain and like Paul wrote in 2 Corinthians 1:3-4, "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
I'm trying to use this time to learn as much as possible about myself, about dealing with others who are suffering, and most importantly, about trying to spread God's love and joy to everyone I come across. Some days I fail miserably and I go home feeling sad because I spoke without first asking God to speak through me, or I allowed my own "bad day" to cross over to someone else's day which just spreads the "blahs" around to others. However, God is teaching me every day how to lean on Him for words, deeds and definitely for attitude. I strive to show God's love through my words, my actions, and hopefully even through my attitude.
"But grow in the grace and knowledge of our Lord and Savior Jesus Christ. To him be glory both now and forever! Amen." 2 Peter 3:18
"Jesus looked at them and said, 'With man this is impossible, but with God all things are possible.'" Matthew 19:26
Thank you all again for reading my ramblings and most of all for continuing to keep me in your prayers. I hope to get well so I can go around and tell people about the amazing ways God used His people and their prayers to heal me. I hope you all have wonderful weekends!
Much love-
K
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