First I want to thank everyone who prayed about my doctor's appointment yesterday. I know God was with me during the appointment. I know He helped me voice my questions and understand the answers I received. Overall it was a good appointment because God gave me a sense of peace about my situation.
The doctor and I discussed the seizure I had last week and she said that it was not a myoclonic seizure (the type I have had before when I was low in magnesium). When I wrote about my seizure on here honestly I was still "out of it" mentally. It took a few days and talking with my husband (and some of the nurses who were there during the seizure)to fully understand what had gone on. I had written that it lasted about 20 minutes. Apparently I was wrong. I did lose consciousness a few times during the episode but not for long periods of time. I did have a "generalized seizure" which I believe just means a seizure that is caused by something other than epilepsy. It was a "grand mal" which is where your entire body is involved - that would explain my arching my back and repeatedly slapping it onto the tile floor. I didn't really feel "like myself" again until Monday or Tuesday.
M and I talked it over and we both felt that the main cause was a extremely bad reaction to a new medication that I started almost exactly 48 hours before the seizure. I had told him before my afternoon treatment session on Friday that my "brain felt weird" and that I was "feeling crazy" and something "was seriously wrong in my brain". The oddest thing to me was that as soon as I heard the name of the medication I was changing to I thought, "I don't want to take this." Then, every time I had to take it (which was 3 times a day) I thought, "I really don't want to take this pill." I even said as much to M a few times. I've never felt that way about a medication before. I feel God was with me and was trying to give me a sense of urgency about telling the nurses what was going on that very day since it was Friday and both the doctor and nurse practitioner were in the clinic. I talked to the nurse and then I believe it was about 20 minutes later that the seizure started. I thank God I was actually at the clinic in treatment when it happened.
In my appointment yesterday the doctor agreed that the medication was most likely the cause of the severity of the seizure and likely why I had it in the first place. However, I also found out that more biofilm has broken up (YAY for that) and that it has let loose another strain of Influenza A & B (BOO for that). I was told that people like me whose immune systems are shot are more "vulnerable" to actually having seizures when they have active flu because the flu attacks our brains in a way. It's not like how most people get the flu and have fever and feel like death for 4-5 days so don't think that the next time you or your children have the flu that a seizure is just waiting to happen!!! I'd hate to scare anyone like that!
Another reason this seizure could have happened is that my brain is trying to function again. I wrote back in June about my brain spect scan that showed I was basically getting no blood or oxygen to certain areas of my brain (temporal lobes, anterior lobes and frontal lobes were all affected to varrying degrees). The Heparin (blood thinner/anti-coagulant) has helped that immensely which has led to me being able to speak without stuttering and has helped my heart to beat more normally. So, the good news is that my brain is trying to work properly again. The bad news is that as this happens it can cause some of the messages to "misfire" because it's been a long time since these areas have had a lot of activity going on. Basically, my brain is trying to fire messages across the synapses but at times it won't happen properly and it will be like a fuse blew out in the circuit board of my brain. This can cause seizures as well. But, knowing that the seizure might actually be showing me some progress in my brain activity makes me feel better about having it! Since we can't be certain that it was only the medication causing the seizure we will stay on the anti-seizure drug and that's fine by me. I take it at night and it's helped me to sleep better than I have in awhile! I need all the sleep I can get in order to physically handle what these treatments do to my body so I'm all for more sleep!
We also found out that I am still low in my overall blood levels (but just by 0.5 instead of 6 like it was after the emergency surgery) and this means I'm also low in my red blood cells. We believe it's still low because my left ovary is having a hard time learning how to function on its own and therefore I've had 5 menstrual cycles in 7 weeks. If this problem is still going on after next week (which will be 2 months since the surgery) then I will go back to the ob-gyn to see if we can do something to keep me from losing so much blood. So sorry if that's TMI for you, but hey, I don't sugar coat this stuff...haha.
The doctor and I also discussed how hard treatment is on my body and that it isn't something that can be rushed. As one friend who has gone through this same treatment put it "having x number of IV treatment sessions doesn't equal out to only have x number of IV treatment sessions left to go" - which is hard to fathom because you want so badly to have some way of knowing when you will be done with the IV treatments! But the doctor has told me that even once I am home I will still be "in treatment" because I will still be on oral antibiotics and supplements for another year or two afterwards. All of that made me realize there's no need for me to try and push my body or rush this because no matter how fast I'm done with the IVs, I've still got a long way to go after that. With all of that being said the doctor brought up the idea of me picking one day a week where I only did the afternoon treatment session and allowed my body to sleep in. I don't think I want to take that step yet, but don't worry, I'm not making any decisions about it quickly. I'm going to see how I feel over the next week or so before letting them know what I want to do. I do know that I am trying to figure out the difference between effective treatment versus treatment that is just too much for my tired body.
I don't just get IV antibiotics, I also take 2 different antibiotics in pill form and of course I have my weekly Bicillin shots which equals 4 different antibiotics total. We've decided to stop the weekly Bicillin shots for now and we're going to decide over the next week or so if I should stop one of the orals so that my body would only be dealing with 2. I am hoping to be able to stay on both orals though because when that biofilm breaks down all sorts of things come out. You all know there are some antibiotics that are best for sinus infections, some work best for pneumonia, etc., etc. Well, by being on 3 different ones I am better able to fight and kill off whatever might be popping out of the biofilm.
I am happy to know that I am making some progress although it is at a much slower pace than I want. I am beginning to understand that God's plan may very well include my healing, but it will be in His perfect timing and not my own. The doctor and I already know that I won't be coming home for Thanksgiving because it's too risky for my immune system. While I hate to miss out on seeing my family and friends - not to mention just getting to sleep in my own bed and be in my own home, I know this is the best thing for my health. I know God can work miracles and I believe I see many of them every day, so I know that things could be much better by then. BUT...I just have a feeling that I will be here awhile - maybe it's more that I have a feeling that God's plan includes me being here for longer than I had thought or hoped.
No matter the length of time, I know God's plan is the best. God is good and He has plans for my life that I cannot even begin to fathom with my finite mind. I know that this is a very hard time for me - physically of course - but I think it is supposed to be a time of growth for me mentally and spiritually. I think after all of this is over, I will look back to this time period in my life - this time spent in treatment - as a time that I learned what strength really was as well as understanding that weakness isn't what we all take that word to mean these days. I should show all my weaknesses because it is through my weaknesses that God can show His mighty strength. Knowing that I am so weak, knowing that there is no way I could do this on my own, letting you all know that I am no superhero or even anything close to that - it allows both me and you to see who is really keeping me going, who is really carrying me when I am too weak to even stand - and we all know that is God. It is His strength I cling to, it is His plan I want to follow, it is His will that I want to heed. I love my doctor out here, but I know who gets credit for my healing and it is God, the Great Physician.
Wanted to share the lyrics to this beautiful song by Ginny Owens. A friend in treatment shared this song & once I heard it I thought when I have those "Why me? Why now? Why is this happening, Lord?" days or moments, this song is a beautiful reminder of His perfect plan. We don't always get to see the "whys" but that doesn't mean we shouldn't follow where He leads us because God is good and He loves His children and while He never says we will have an easy life, He does promise to always be there. So this song seemed like a good ending point to this terribly long entry:
If You Want Me To by Ginny Owens
The pathway is broken
And the signs are unclear
And I don't know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley
If You want me to
CHORUS:
Now I'm not who I was
When I took my first step
And I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to
It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone
So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to.
Saturday, September 26, 2009
Friday, September 25, 2009
I need prayers
I meet with my IV doctor at 2:00 pm today (Central time) and I need prayers before going into that meeting. I've been worried that they are pushing my body a little too hard with the meds and of course, trying to be the compliant patient, I have not said anything yet. I hate to complain at all because I feel like God led me here and I want to do whatever it takes to get well. However, after that seizure Friday I had to think a lot. I'm glad M was here with me because he made me see that things a little clearer. It's hard to be on treatment and your brain feels like mush - jello brain is what one friend calls is & I agree. Sometimes it's just hard to know what feelings are coming from the medications, what feelings are coming from the illnesses themselves, what feelings are coming from me & then, and much more importantly, how to wade through all of that to get to what God is trying to tell me.
Please pray that I have discernment during this meeting & I feel God's presence with me. I am going to have to be a little confrontational and that's hard for me to do with authority figures. I need God's help so much. I pray that He speaks for me - that He gives me the words to say and that He gives my doctor the ears to listen. I'm trying to make sure that I'm not just feeling "antsy" to get home because that should not factor into my decision. I may have to be here for a long while in order to regain my health. I just pray that whatever God has in mind for me, whatever HIS will is, that I will recognize it and follow it immediately.
Thank you so much for all your prayers. I couldn't get through this without all of you being so supportive and I'm amazed at what God is doing for me by sending you all into my life.
Much love-
Karen
Please pray that I have discernment during this meeting & I feel God's presence with me. I am going to have to be a little confrontational and that's hard for me to do with authority figures. I need God's help so much. I pray that He speaks for me - that He gives me the words to say and that He gives my doctor the ears to listen. I'm trying to make sure that I'm not just feeling "antsy" to get home because that should not factor into my decision. I may have to be here for a long while in order to regain my health. I just pray that whatever God has in mind for me, whatever HIS will is, that I will recognize it and follow it immediately.
Thank you so much for all your prayers. I couldn't get through this without all of you being so supportive and I'm amazed at what God is doing for me by sending you all into my life.
Much love-
Karen
Saturday, September 19, 2009
Even during a seizure, God is with me.
Just a quick update because I had some crazy stuff happen in the last few days and want some prayers going up for me to get good sleep and allow my body to rest and heal from all the chaotic events! I had seizure in treatment yesterday. They referred to it as a myoclonic seizure, but by definition those don't normally involve your entire body. I feel to the floor and did not completely lose conciousness, although some of the events I can't recall clearly. For anyone who knows much about seizures I had more of a "tonic-clonic" generalized seizure. It lasted for a pretty long time (well, as long in seizure time - like 20+ minutes maybe?).
I had a medication change on Wednesday and had been weaning off of my Valium and Ativan because the new med was a replacement for those. I had an odd feeling about the new drug from the very beginning and after only 48 hours on the drug I knew I needed to tell the nurse what it was doing to me. I didn't feel like myself at all - having crazy thoughts, crying uncontrollably, feeling anxious, etc. But the main symptom I should have paid attention to was the stabbing headache behind my right eye. The nurses could see the vein on the side of my nose (near the corner of your eye) was bulging out & pulsating. This headache lasted 12 hours and I tried ice packs and everything but no real relief. Oddly enough, the headache was gone after the seizure.
God was with me the whole time. I had the seizure DURING my afternoon treatment so I was at the clinic with plenty of nurses around. I knew what was going on - I have had these before, although they never lasted as long and weren't quite as severe. I prayed out loud & said, "Thank you God for allowing this to happen here at the clinic. Thank you God for these sweet nurses who are taking such good care of me. Thank you God for not allowing M to have to see this and definitely for not allowing it to occur at the apartment when we were alone. Thank you God for being with me RIGHT NOW and allowing me to know and feel your presence. I know you will not give me more than I can bear - I know that I will come through this and I thank you for always being with me and watching over me." Those were the only words I was able to say clearly without slurring or stuttering.
The reason for the seizure is a mixture of things - 1) the new medication did not react well in my central nervous system 2) getting off of the Ativan & Valium was a bad move since those are used as "anti-seizure meds" in some patients and 3) I am extremely deficient in Magnesium which can cause muscle spasms that lead to seizures. The good news is that I was not scared and that I was more concerned with the patients who were having to watch it happen. You don't have pain during the seizure but the muscle contractions can cause you to make horrible sounding grunting noises. After the seizure you are very sore from the muscles contracting so severely. I honestly looked like a fish out of water with my head trying to go back and my feet and legs trying to go back - I was arching my back and had no control over any of my movements. I think it is much harder to watch someone have a seizure than to actually be the one having it. At least in this instance because I knew what was happening and I was not scared - I knew I just had to ride it out. And that's what I did - along with the help of some IV meds!
Today I went to morning treatment and the nurses were surprised I made it because with the IV drugs they had to administer plus the exhaustion that comes from having the seizure itself, I really should have gone home & slept for hours on end. However, my central nervous system was so keyed up that I only slept for a few hours. I received injections of Ativan during treatments today instead of taking it orally just to make sure I got the right amount of the drug into my system. I still came home and couldn't even nap. I have yet to sleep more than 5 hours total since this happened (which was around 4:45 or so yesterday afternoon).
The new drug was discontinued and I was put on a anti-seizure medication that also helps with nerve pain and muscle spasms. I read all about it and feel like it could really make a difference in my getting a good night's rest. We also started me back on the Ativan and Valium just like I had been taking. There was no way for the doctor to know I would react to the new medication like this - it seriously happens to less than 0.5 percent of the people who take it.
Okay...I've written a lot more than I meant too - need to get off this computer because it can stir up my central nervous system too. I have more to say about what all occured and how God was so very present with me during this episode. But, for now, I need to see if I can actually sleep some.
Much love to you all!
K
I had a medication change on Wednesday and had been weaning off of my Valium and Ativan because the new med was a replacement for those. I had an odd feeling about the new drug from the very beginning and after only 48 hours on the drug I knew I needed to tell the nurse what it was doing to me. I didn't feel like myself at all - having crazy thoughts, crying uncontrollably, feeling anxious, etc. But the main symptom I should have paid attention to was the stabbing headache behind my right eye. The nurses could see the vein on the side of my nose (near the corner of your eye) was bulging out & pulsating. This headache lasted 12 hours and I tried ice packs and everything but no real relief. Oddly enough, the headache was gone after the seizure.
God was with me the whole time. I had the seizure DURING my afternoon treatment so I was at the clinic with plenty of nurses around. I knew what was going on - I have had these before, although they never lasted as long and weren't quite as severe. I prayed out loud & said, "Thank you God for allowing this to happen here at the clinic. Thank you God for these sweet nurses who are taking such good care of me. Thank you God for not allowing M to have to see this and definitely for not allowing it to occur at the apartment when we were alone. Thank you God for being with me RIGHT NOW and allowing me to know and feel your presence. I know you will not give me more than I can bear - I know that I will come through this and I thank you for always being with me and watching over me." Those were the only words I was able to say clearly without slurring or stuttering.
The reason for the seizure is a mixture of things - 1) the new medication did not react well in my central nervous system 2) getting off of the Ativan & Valium was a bad move since those are used as "anti-seizure meds" in some patients and 3) I am extremely deficient in Magnesium which can cause muscle spasms that lead to seizures. The good news is that I was not scared and that I was more concerned with the patients who were having to watch it happen. You don't have pain during the seizure but the muscle contractions can cause you to make horrible sounding grunting noises. After the seizure you are very sore from the muscles contracting so severely. I honestly looked like a fish out of water with my head trying to go back and my feet and legs trying to go back - I was arching my back and had no control over any of my movements. I think it is much harder to watch someone have a seizure than to actually be the one having it. At least in this instance because I knew what was happening and I was not scared - I knew I just had to ride it out. And that's what I did - along with the help of some IV meds!
Today I went to morning treatment and the nurses were surprised I made it because with the IV drugs they had to administer plus the exhaustion that comes from having the seizure itself, I really should have gone home & slept for hours on end. However, my central nervous system was so keyed up that I only slept for a few hours. I received injections of Ativan during treatments today instead of taking it orally just to make sure I got the right amount of the drug into my system. I still came home and couldn't even nap. I have yet to sleep more than 5 hours total since this happened (which was around 4:45 or so yesterday afternoon).
The new drug was discontinued and I was put on a anti-seizure medication that also helps with nerve pain and muscle spasms. I read all about it and feel like it could really make a difference in my getting a good night's rest. We also started me back on the Ativan and Valium just like I had been taking. There was no way for the doctor to know I would react to the new medication like this - it seriously happens to less than 0.5 percent of the people who take it.
Okay...I've written a lot more than I meant too - need to get off this computer because it can stir up my central nervous system too. I have more to say about what all occured and how God was so very present with me during this episode. But, for now, I need to see if I can actually sleep some.
Much love to you all!
K
Tuesday, September 15, 2009
The truth of the matter...
I know I have been slow in posting on here lately. Really I think I've been slow in just about everything. I decided to wait until next week to start the Babesia treatment because my body is a little pushed right now. I had blood drawn today and hope to find out that I have finally kicked Influenza A's butt after 3 months of it being active & 3 months of expensive flu medication!!! However, my next appt. with the IV doc isn't until Saturday of next week.
I have come to realize that I have no clue what "good" feels like. The nurses will ask me if I am feeling better & I think, "Well, the Heparin has helped me greatly in my ability to talk and get blood/oxygen to my brain, but really that's the only change for now." Then I hear myself say, "I'm doing okay." But yesterday I finally had to admit that I am NOT doing okay. My cardiac issues are coming back for some reason. Heparin (the blood thinner/anti-coagulant) had helped a lot and I hadn't been noticing my heart beating as hard or fast. I was able to stand up for longer periods of time without my blood pressue bottoming out & fainting. I was feeling almost normal as far as my heart was concerned. Then things started to change & I really didn't want to acknowledge the change. Well, that and honestly, I've been living with cardiac issues for so long that when they do "reappear" or get worse, I don't notice it as much (or maybe I should say as quickly) as someone who had never had heart problems might.
The PICC line I have in my arm is threaded up my vein and ends at the top of my heart. Over the past 2-3 weeks I've noticed that when my IV drip is slowed down or if it is made to drip at a faster rate, my heart hurts. I feel the beat change and I have had a lot more "skipped beats" where it feels like my heart stops for a few seconds and then it beats hard & fast to catch back up into a rhythm. I had wondered why some days it seemed like my veins were just sucking up the IV antibiotics really fast even though they were dripping slow. Turns out that was when my heart would jump/race/beat fast and it caused the pace of the fluids coming in to change.
Honestly, I hate this more than anything because my heart issues are really the scariest of my Lyme symptoms. My doctor knows this and that's why everyone else in the clinic who is on IV Doxycycline is able to be on a 1.5 hour bag while I have to be on a 2 hour bag. I'm not getting more of the antibiotic, I'm being given it at a slower rate due to my heart problems. I may have explained this but the Babesia can cause "air hunger" or the feeling that something is constricting your chest or sitting on it. If any of you have had a bad case of pneumonia or bronchitis you might know what I mean by that description. However, I finally had to admit that my heart was back to its former ways - it races when I stand, walk, and sadly when I talk or laugh. I took my pulse meter with me to treatment to make sure the numbers were what I thought they were. Sure enough walking to my treatment chair got my heart up to 136 beats per minute. If I leaned back in my chair and was quiet it would go back to around 90. If I tried to talk or giggle it would shoot back up into the 120s - 130s. So I wrote a note to the doctor today to let them know what was going on.
I feel like I try to focus on the positive changes that have taken place and ignore the pesky troublesome symptoms that creep up or haven't left at all yet. But when I came home from treatment my heart actually hurt and I was exhausted. Whenever my heart rate fluctuates a lot (sometimes in the 40s/50s then going into the 140s or so) it makes my body feel like I have been in a relay race - running really fast until I pass the baton to someone else & stop running. I am hoping to hear from the doctor tomorrow about what we could do to help with these symptoms. But I had the hardest time admitting that they were back. If you want to know why it's because I want so much to get better - even if it takes longer than I anticipated - I want to write about every small improvement. I feel like I have this HUGE cheering section of family and friends (and friends of friends & sometimes people I don't even know) and they (or you as you're the one reading this) have been praying so hard for me that I hate to say, "Well guys, here's another set back." That's so terribly stupid, but the human brain isn't very rational - or at least mine isn't.
I don't pray to regain my health anymore. That might sound odd, but I really try to pray for God's will. His will may very well be for me to finally know what it feels like to live the life of a healthy person, but as I give more and more of myself to Him I also must acknowledge that I don't know what His plans are for me. I trust only in the fact that God is good and He is working in me for some reason with some plan that I don't have to fully understand to participate in. I want to make sure that I am obedient to His will and that I praise Him and spread His word and love to others. I feel like He sent me here to get treatment but I've felt that this has always been more about reaching others and hopefully bringing them closer to God than it has been about my own personal health. Maybe that makes sense to you, maybe it doesn't. I'll say it this way: I WANT to get better and go home and be able to be a healthy wife and hopefully one day a healthy mother. I WANT this to happen as quickly as possible. I WANT all of this to have a fairy tale type of happy ending. But I am learning that I don't live for what I WANT - I am trying to live for what GOD WANTS. His plan may very well be that I get all of those things that I want, but I pray simply that HIS WILL be done instead of praying for MY WANTS. He already knows my heart's desires, I don't need to list them off as though making a list for Santa Claus. I think that might be the best way to describe how I pray now - just for His will to be done.
The other day I was reading I & II Corinthians and so much of what Paul writes in those books seems to jump off the page and into my soul:
Like in I Corinthians 2:9 Paul writes (he is speaking of verses from Isaiah here), "However, it is written: 'No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him'."
Later, in II Corinthians 4:7-10 Paul writes, "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body."
Then I read on in II Corinthians 12:7-10 and am always amazed by what Paul says here, "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, as messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
People sometimes write me emails or send me cards saying they are amazed by how I am handling all of this. I almost laugh because it is so obvious to me that I am not the one handling it AT ALL! If I were handling this, I would have already turned tail and run!!! Any strength you see in me is only from God, any grace you see through me is only from God. I personally possess nothing that makes me particularly well equipped to deal with all of this. I am weak and I still pitch fits and I groan to God often. Anything that makes you think I'm dealing with all of this amazing well is not from me at all - it is ONLY from God. I wish I had the strength of Paul - I aspire to have that strong of a faith one day, but for now there's still part of me that wants to beg God to remove this "thorn from my flesh". God is also the reason I keep going when I sometimes cry to stop, He is why I push my body further than I want to push. He is every good thing you might think you see in me. I am still learning and I have so much left to learn. What I have learned to be so very true is that God will give you enough of whatever you need to get through that day if you pray for His help. I have learned that I cannot worry about tomorrow because it won't do me any good. I've always been a "worrier" but I am trying to hand that over to God too. He is showing me that by the end of each day I may feel crushed, beaten down, exhausted, and drained physically, mentally and emotionally but He continues to give me the strength to get up the next morning and the desire to go and fight the battle again.
So, the truth of the matter is this - I'm a "people pleaser" by nature so I want to only tell you all when the good news comes. I want you to feel encouraged and I want you to read these entries and feel uplifted. I am learning though that I need to tell you all when the bad news comes too. Yesterday I came home to the apartment after treatments and I cried to my mom. I cried because my body is so tired that I couldn't imagine doing one more day of treatments. I cried because I've been here for a little over 3 months and I haven't seen the HUGE STRIDES of progress that I wanted to see by this point. I cried because I had to admit that my heart is acting up again and I wonder really how much more it can take. I cried because I'm human and I'm mad, sad, frustrated, confused, and angry. God knows all of that. He knows I can only take so much. He doesn't expect me to be perfect - thank you, Lord for that because I would fail miserably. I really cried because I allowed myself to think ahead - to the near future. I allowed myself to worry about how long this is really going to take. I allowed myself to worry that 30 years of multiple illnesses which have become chronic infections that are doing some sort of damage to basically every organ system I have may be too far gone to fix. I allowed myself to worry that my body might not be strong enough to fight this battle. I told my mom my scary thought - the one I've been having to face over these past few years - that my own body is fighting AGAINST me. My immune system is shot and confused and it's not fighting the illnesses, it's fighting the medications that are trying to kill off the infections. I allowed myself to say that there may come a time when I decide that this treatment regimen is too tough on my body and that maybe I did not get here in the "nick of time" to regain my health. But those thoughts, my friends, are not from God. Those dark, scary, worrisome thoughts are all about the future and I don't need to worry about the future because God has a plan for me. It doesn't matter that I don't know what it is. I cling to that scripture Paul quoted from Isaiah - I have no idea what God has in store for me. I only know I need to lean more on Him. Then when those dark, scary, worrisome thoughts try to creep into my brain, I need to recognize where they are coming from and hand them right over to God.
It's so hard - all of this is so hard. Treatments are hard both physically and mentally, being away from my husband for weeks at a time is hard, not making huge strides of progress is hard, knowing that I don't have a clue as to what my future holds is hard on me - I'm a planner and I like knowing what's in store. It's all so very hard, but God knows this and He is with me. Some days He feels further away than others, but I know He is always there. He is trying to turn me into the person He wants me to become and that in itself can be a painful process - even without the illnesses. So, the truth of the matter is I am a weak woman with a strong God who is carrying me through this while I weep and cry out to Him.
He wants me to show my weak side. He wants me to let you all know that without Him, I would be utterly and completely lost and without hope. Hope lies in Him and Him alone. My hope rests in His promises and while I may have some really rough days, I never prayed, "Dear God, please grant me health without making me go through some hard days and make it super fast." I prayed simply, "God, I am so sick. Please lead me to where I need to be to get help." That prayer was answered.
Now I am off to bed and I will get to see my sweet M tomorrow and hug his neck and smile with him. I will wake up tomorrow and God will grant me the strength to go on to treatment again because that seems to be where God wants me right now.
Much love to you all!
K
I have come to realize that I have no clue what "good" feels like. The nurses will ask me if I am feeling better & I think, "Well, the Heparin has helped me greatly in my ability to talk and get blood/oxygen to my brain, but really that's the only change for now." Then I hear myself say, "I'm doing okay." But yesterday I finally had to admit that I am NOT doing okay. My cardiac issues are coming back for some reason. Heparin (the blood thinner/anti-coagulant) had helped a lot and I hadn't been noticing my heart beating as hard or fast. I was able to stand up for longer periods of time without my blood pressue bottoming out & fainting. I was feeling almost normal as far as my heart was concerned. Then things started to change & I really didn't want to acknowledge the change. Well, that and honestly, I've been living with cardiac issues for so long that when they do "reappear" or get worse, I don't notice it as much (or maybe I should say as quickly) as someone who had never had heart problems might.
The PICC line I have in my arm is threaded up my vein and ends at the top of my heart. Over the past 2-3 weeks I've noticed that when my IV drip is slowed down or if it is made to drip at a faster rate, my heart hurts. I feel the beat change and I have had a lot more "skipped beats" where it feels like my heart stops for a few seconds and then it beats hard & fast to catch back up into a rhythm. I had wondered why some days it seemed like my veins were just sucking up the IV antibiotics really fast even though they were dripping slow. Turns out that was when my heart would jump/race/beat fast and it caused the pace of the fluids coming in to change.
Honestly, I hate this more than anything because my heart issues are really the scariest of my Lyme symptoms. My doctor knows this and that's why everyone else in the clinic who is on IV Doxycycline is able to be on a 1.5 hour bag while I have to be on a 2 hour bag. I'm not getting more of the antibiotic, I'm being given it at a slower rate due to my heart problems. I may have explained this but the Babesia can cause "air hunger" or the feeling that something is constricting your chest or sitting on it. If any of you have had a bad case of pneumonia or bronchitis you might know what I mean by that description. However, I finally had to admit that my heart was back to its former ways - it races when I stand, walk, and sadly when I talk or laugh. I took my pulse meter with me to treatment to make sure the numbers were what I thought they were. Sure enough walking to my treatment chair got my heart up to 136 beats per minute. If I leaned back in my chair and was quiet it would go back to around 90. If I tried to talk or giggle it would shoot back up into the 120s - 130s. So I wrote a note to the doctor today to let them know what was going on.
I feel like I try to focus on the positive changes that have taken place and ignore the pesky troublesome symptoms that creep up or haven't left at all yet. But when I came home from treatment my heart actually hurt and I was exhausted. Whenever my heart rate fluctuates a lot (sometimes in the 40s/50s then going into the 140s or so) it makes my body feel like I have been in a relay race - running really fast until I pass the baton to someone else & stop running. I am hoping to hear from the doctor tomorrow about what we could do to help with these symptoms. But I had the hardest time admitting that they were back. If you want to know why it's because I want so much to get better - even if it takes longer than I anticipated - I want to write about every small improvement. I feel like I have this HUGE cheering section of family and friends (and friends of friends & sometimes people I don't even know) and they (or you as you're the one reading this) have been praying so hard for me that I hate to say, "Well guys, here's another set back." That's so terribly stupid, but the human brain isn't very rational - or at least mine isn't.
I don't pray to regain my health anymore. That might sound odd, but I really try to pray for God's will. His will may very well be for me to finally know what it feels like to live the life of a healthy person, but as I give more and more of myself to Him I also must acknowledge that I don't know what His plans are for me. I trust only in the fact that God is good and He is working in me for some reason with some plan that I don't have to fully understand to participate in. I want to make sure that I am obedient to His will and that I praise Him and spread His word and love to others. I feel like He sent me here to get treatment but I've felt that this has always been more about reaching others and hopefully bringing them closer to God than it has been about my own personal health. Maybe that makes sense to you, maybe it doesn't. I'll say it this way: I WANT to get better and go home and be able to be a healthy wife and hopefully one day a healthy mother. I WANT this to happen as quickly as possible. I WANT all of this to have a fairy tale type of happy ending. But I am learning that I don't live for what I WANT - I am trying to live for what GOD WANTS. His plan may very well be that I get all of those things that I want, but I pray simply that HIS WILL be done instead of praying for MY WANTS. He already knows my heart's desires, I don't need to list them off as though making a list for Santa Claus. I think that might be the best way to describe how I pray now - just for His will to be done.
The other day I was reading I & II Corinthians and so much of what Paul writes in those books seems to jump off the page and into my soul:
Like in I Corinthians 2:9 Paul writes (he is speaking of verses from Isaiah here), "However, it is written: 'No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him'."
Later, in II Corinthians 4:7-10 Paul writes, "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body."
Then I read on in II Corinthians 12:7-10 and am always amazed by what Paul says here, "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, as messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
People sometimes write me emails or send me cards saying they are amazed by how I am handling all of this. I almost laugh because it is so obvious to me that I am not the one handling it AT ALL! If I were handling this, I would have already turned tail and run!!! Any strength you see in me is only from God, any grace you see through me is only from God. I personally possess nothing that makes me particularly well equipped to deal with all of this. I am weak and I still pitch fits and I groan to God often. Anything that makes you think I'm dealing with all of this amazing well is not from me at all - it is ONLY from God. I wish I had the strength of Paul - I aspire to have that strong of a faith one day, but for now there's still part of me that wants to beg God to remove this "thorn from my flesh". God is also the reason I keep going when I sometimes cry to stop, He is why I push my body further than I want to push. He is every good thing you might think you see in me. I am still learning and I have so much left to learn. What I have learned to be so very true is that God will give you enough of whatever you need to get through that day if you pray for His help. I have learned that I cannot worry about tomorrow because it won't do me any good. I've always been a "worrier" but I am trying to hand that over to God too. He is showing me that by the end of each day I may feel crushed, beaten down, exhausted, and drained physically, mentally and emotionally but He continues to give me the strength to get up the next morning and the desire to go and fight the battle again.
So, the truth of the matter is this - I'm a "people pleaser" by nature so I want to only tell you all when the good news comes. I want you to feel encouraged and I want you to read these entries and feel uplifted. I am learning though that I need to tell you all when the bad news comes too. Yesterday I came home to the apartment after treatments and I cried to my mom. I cried because my body is so tired that I couldn't imagine doing one more day of treatments. I cried because I've been here for a little over 3 months and I haven't seen the HUGE STRIDES of progress that I wanted to see by this point. I cried because I had to admit that my heart is acting up again and I wonder really how much more it can take. I cried because I'm human and I'm mad, sad, frustrated, confused, and angry. God knows all of that. He knows I can only take so much. He doesn't expect me to be perfect - thank you, Lord for that because I would fail miserably. I really cried because I allowed myself to think ahead - to the near future. I allowed myself to worry about how long this is really going to take. I allowed myself to worry that 30 years of multiple illnesses which have become chronic infections that are doing some sort of damage to basically every organ system I have may be too far gone to fix. I allowed myself to worry that my body might not be strong enough to fight this battle. I told my mom my scary thought - the one I've been having to face over these past few years - that my own body is fighting AGAINST me. My immune system is shot and confused and it's not fighting the illnesses, it's fighting the medications that are trying to kill off the infections. I allowed myself to say that there may come a time when I decide that this treatment regimen is too tough on my body and that maybe I did not get here in the "nick of time" to regain my health. But those thoughts, my friends, are not from God. Those dark, scary, worrisome thoughts are all about the future and I don't need to worry about the future because God has a plan for me. It doesn't matter that I don't know what it is. I cling to that scripture Paul quoted from Isaiah - I have no idea what God has in store for me. I only know I need to lean more on Him. Then when those dark, scary, worrisome thoughts try to creep into my brain, I need to recognize where they are coming from and hand them right over to God.
It's so hard - all of this is so hard. Treatments are hard both physically and mentally, being away from my husband for weeks at a time is hard, not making huge strides of progress is hard, knowing that I don't have a clue as to what my future holds is hard on me - I'm a planner and I like knowing what's in store. It's all so very hard, but God knows this and He is with me. Some days He feels further away than others, but I know He is always there. He is trying to turn me into the person He wants me to become and that in itself can be a painful process - even without the illnesses. So, the truth of the matter is I am a weak woman with a strong God who is carrying me through this while I weep and cry out to Him.
He wants me to show my weak side. He wants me to let you all know that without Him, I would be utterly and completely lost and without hope. Hope lies in Him and Him alone. My hope rests in His promises and while I may have some really rough days, I never prayed, "Dear God, please grant me health without making me go through some hard days and make it super fast." I prayed simply, "God, I am so sick. Please lead me to where I need to be to get help." That prayer was answered.
Now I am off to bed and I will get to see my sweet M tomorrow and hug his neck and smile with him. I will wake up tomorrow and God will grant me the strength to go on to treatment again because that seems to be where God wants me right now.
Much love to you all!
K
Tuesday, September 8, 2009
Leaning on Him for ALL things...
So I found out yet again that taking breaks from treatments is worse than treatment itself. It’s really sad though because I get so excited about the thought of sleeping past 6:00 a.m. and for some reason I always think I am going to actually feel like doing something when I’m off. This break was especially bad because of the Babesia. I’ve explained how Babesia makes you angry, irritable, and with a real “short fuse” temper wise. I also already wrote that the doctor is waiting until the 14th to start treating the Babesia so it will be 6 weeks after my surgery so we’ll start Monday.
I realized I needed to be getting some warmer clothes since I know I will be here at least until the end of November. So I felt that I would try and shop on my break. I tried to shop Saturday but left the apartment without my ear plugs OR my MP3 player! This is a big deal because ALL of my senses have “heightened sensitivity”. Basically I can smell things other people can’t, noises seem much louder to me, my vision is so light sensitive that I wear my sunglasses indoors anywhere that has fluorescent lighting. Saturday I made it into 2 stores and the music was so loud and the people talking seemed like screams and there I was with no way to “drown out the noise”. I looked at mom and said, “We HAVE to leave.” My head was killing me! And Babesia can give you bad headaches too so I was just in pain. We went to Michael’s (the arts & crafts store) to get me some paints and a canvas so that I might make something. The doctor thinks even something as small as coloring can soothe the “helpless feeling” you get in treatment. I finally had an easel and a canvas in my cart when I just looked at mom and said, “I’m leaving – I don’t even want any of this.”
I cried when I was in the car. For those who don’t know me well you might not understand this behavior. A lot of people don’t like to shop. They dread it in fact. However, I have always seen shopping as somewhat of a sport. It’s me against the store and I am bound and determined to get the best possible items for the cheapest price! So, I was feeling like having a pity party because it felt like once again this illness was taking something else I once loved to do. I hadn’t really wanted to go shopping because I didn’t feel up to it, but I knew I needed some winter shoes and clothes. To realize that I couldn’t even go to 2 stores before my central nervous system just shut down on me was so hard. I tried to calm down by telling myself that if I physically felt like shopping then I wouldn’t be out here getting IV treatments in the first place! However, that didn’t help much. I just kept feeling like all these infections (Lyme Plus as my doctor calls it) have stripped me of things I love to do and kept me from living my life as I want. The noise sensitivity has kept me from being around all my sweet nieces and nephews and I no longer enjoy the sound of kids playing so I have missed out on a lot with family and a lot with my friends and their children. I cried and I went to bed that night around 6:00 and didn’t even wake up to eat dinner. I was too busy feeling sorry for myself and I didn’t want to see the “positive side” of things at the moment.
Sunday I read some more from my “100 Days in the Secret Place” book and realized how much I have left to learn. I don’t know why I think I will ever “know it all” because I’m only human and we all have so much left to learn. I have said I know that God led me here and that God is with me through all of this. But I don’t believe I really understood those statements fully before this weekend. Here’s a section of what I read that seemed to reach down and make me realize how silly I was being:
“The best place to be is where God puts you. Any other place is undesirable because you chose it for yourself. Do not think too much about the future. Worrying about things that haven’t happened yet is unhealthy for you. God Himself will help you, day by day. There is no need to store things up for the future. Don’t you believe that God will take care of you?
A life of faith does two things: Faith helps you see God behind everything that He uses. And faith also keeps you in a place where you are not sure what will happen next. TO have faith you cannot always want to know what is happening or going to happen. God wants you to trust Him alone from minute to minute. The strength He gives you in one minute is not intended to carry you through to the next. Let God take care of His business. Just be faithful to what God asks of you. To depend on God from moment to moment – especially when all is dark and uncertain – is a true dying to your old self. This process is so slow and inward that it is often hidden from you as well as others. When Gods takes something away from you, you can be sure He knows how to replace it. There is a story that when Paul was alone in the desert, a raven brought him half a loaf of bread every day. If Paul’s faith had wavered and he wanted to be sure to have enough, he might have prayed that the raven would bring enough for 2 days. Do you think the raven would have come back at all! Eat in peace what God gives you. “Tomorrow will take care of itself” (see Mt 6:34). The One who feeds you today will surely feed you tomorrow.” – Archbishop Fenelon of France
Now, I read that and realized that there are MANY things I have learned to give over to God, but I was planning on handling my winter clothes myself, thank you very much. It may sound stupid or silly, but when I read that I realized that maybe the reason my shopping trip wasn’t lucrative was because I hadn’t prayed about it. Some of you may think praying for a shopping trip might be silly – and maybe in your situation that’s true. However, I am learning every single day that God is stripping me of all my old ways and wanting to be a part of EVERYTHING I do on a daily basis. He wants me to talk to Him about ALL my thoughts and He wants me to pray to Him for help on ALL my decisions – the small ones & the big ones.
So, I prayed that night. I told a friend in treatment about this prayer and it made her laugh – and it made me laugh after I said the words, but it’s what happened. I told her I prayed, “God, I don’t want ‘cool clothes’, I just need some warm clothes for winter! Can you help me with that?” But we laughed because we knew how true it was that we need help from God with the simplest tasks in order to get them done. However, my prayer was actually more like this, “Dear God – you know how worried I can get. My brain seems to go in search of things to worry about even though I know You will take care of all my provisions. I didn’t come to You before I went on my shopping trip yesterday because I didn’t think about bringing that before you. I’ve never thought that praying about a shopping trip would be something I should do. However, I see now that there is so much I never knew about things you wanted me to do and how you wanted me to do them. God, I am not asking to find ‘cool clothes’ – I just really need to feel like I have some cold weather essentials like long sleeve shirts that have sleeves large enough to come up above my PICC line. I need some sort of hat and scarf because I already have my winter jacket up here. I REALLY need some warm boots that I have no heel and that don’t zip or tie because putting shoes on is hard for my hands and hard for me to bend over to fasten them. I want to be able to slip them on and off easily during treatment. I need some leggings and socks that will keep me warm as well. I have tried very hard to learn to give control of my life over to You. I am constantly trying to not question Your will every step of the way and especially during my setbacks. I don’t know if praying for a shopping trip is even right, but I feel that I have to come to You with all things now. I also am praying because I don’t want to spend a lot of money on these things because medical costs are high enough. Now I know I need to pray to You for the strength to even go shopping and I know I can’t shop for these things over the internet because I wouldn’t be able to tell if the clothes felt soft and comfortable, or if they fit, or if they would work with my PICC line. So I’m praying that You allow me to find some of these things so that I can feel more prepared to stay where You clearly want me to be right now, which is here in Kansas City.”
The next day I packed my ear plugs and my MP3 player. I printed out a map of the mall in Kansas (about 12 miles away) where Mom and I were headed. I even highlighted the 4-5 stores I thought we needed to hit to get what I was looking for. I was a woman on a mission. I knew I only had about 2 hours of energy (if that much) to get this done and then I would collapse and be exhausted. Funny thing about praying to God about even the smallest things is that He does care. He wants you to bring everything before Him. My trip yesterday was a complete success. I got WARM boots with fuzzy lining and they even fit my narrow feet. They slip on and off with no problems and were more than $100 off from their original price. They were also the only pair of boots like that in all of the sale rack & were just my size. I said, “Thank you Lord” and I bought them. Then I found 3 pairs of knee socks on sale and knee socks help keep my legs warm since I have such trouble with my circulation and stay so cold. I also found not 1 but 2 pair of leggings that can be worn alone with oversized sweaters or worn underneath pants almost like long underwear. Those weren’t on sale, but they were still pretty cheap. I found a very soft and large scarf. The kind you can wrap around your neck and down around your shoulders. I will probably even use that during treatment because it felt so good – and it was on a great sale too! I found a hat for cheaper than any of the other hats I had seen. I found 3 long sleeve cotton shirts that I can layer but that all have enough stretch in the sleeves to pull above my PICC line. And I found a really comfortable sweater/coat. It’s long and comes close to my knees and has a hood and buttons up the front. The sleeves are large enough for my PICC line and it is soft and machine washable (no dry cleaning needed here). When I get back to Alabama I could probably use it as a coat!
Now, all of this was done in under 2 hours and I couldn’t for the life of me tell you how that happened except that God showed me where to go to get the things I needed. When we got to the car I looked up and simply said, “Thank you God for allowing me to find things I need for the colder months out here.” Mom smiled and inside I knew that God wasn’t worried about my shopping trip. I think He wanted me to know that He understood my desire to feel prepared. Everything else here has happened so quickly and I’ve been unprepared or ill prepared for it all. I have handed so many things over to Him after struggling about what to do in different situations. I knew that He was allowing me to have a peaceful feeling about being here longer than I had planned and I know He wanted me to realize yet again, that I must come to Him for EVERYTHING!
That example is just one of many. God provides for us. God loves us. God cares about the cares of our heart and wants us to know that we may count on Him for ALL things. So I will not worry about tomorrow and starting the antioxidant IVs. I will not worry about next week and starting the difficult treatment for Babesia. I trust God will be with me every step of the way and I know that while I may be scared for a moment, I will remember and feel His presence and in His presence fear slips away like a thief in the night.
Now I will close yet another lengthy entry with a few quotes:
“Why would God promise a refuge unless He knew we would need a place to hide once in a while?” Neva Coyle
“Trials may come in abundance. But they cannot penetrate into the sanctuary of the soul when it is settled in God, and we may dwell in perfect peace.” Hannah Whitall Smith
“The Lord alone shall be exalted” Isaiah 2:11 (KJV)
Thank you Lord for allowing us to cast all our cares upon You and for allowing us to feel Your love and comfort when we seem so lost. I trust in You for everything and will try harder each day to give every single worry over to You. I have no need for worries. They will only hamper my progress. You ask that I hand them all to You and so this is my goal, to follow what You want me to do. Thank you for giving me signs (both big and small) throughout this journey as I continue to fight these battles for my health. Thank you for blessing me with treatment friends who understand that a successful shopping trip is like a miracle in itself. Thank you for all the many people out there praying for me and I pray that they too feel Your love and comfort every day.
I’m also praying right now for a very close friend whose Grandmother is ill and who is on her way to see You. She has said she is ready to “come home” and I know Heaven will rejoice when she arrives. I pray for the family left behind on earth who will miss her because she is such a loving and wonderful woman. I pray that they envision her getting to Heaven and seeing her husband (who passed years ago) smiling with excitement to be reunited with her. That’s how I picture her – smiling and laughing and just so happy to be with her Lord and Savior and with all those who passed before her.
Much love to you all!
I realized I needed to be getting some warmer clothes since I know I will be here at least until the end of November. So I felt that I would try and shop on my break. I tried to shop Saturday but left the apartment without my ear plugs OR my MP3 player! This is a big deal because ALL of my senses have “heightened sensitivity”. Basically I can smell things other people can’t, noises seem much louder to me, my vision is so light sensitive that I wear my sunglasses indoors anywhere that has fluorescent lighting. Saturday I made it into 2 stores and the music was so loud and the people talking seemed like screams and there I was with no way to “drown out the noise”. I looked at mom and said, “We HAVE to leave.” My head was killing me! And Babesia can give you bad headaches too so I was just in pain. We went to Michael’s (the arts & crafts store) to get me some paints and a canvas so that I might make something. The doctor thinks even something as small as coloring can soothe the “helpless feeling” you get in treatment. I finally had an easel and a canvas in my cart when I just looked at mom and said, “I’m leaving – I don’t even want any of this.”
I cried when I was in the car. For those who don’t know me well you might not understand this behavior. A lot of people don’t like to shop. They dread it in fact. However, I have always seen shopping as somewhat of a sport. It’s me against the store and I am bound and determined to get the best possible items for the cheapest price! So, I was feeling like having a pity party because it felt like once again this illness was taking something else I once loved to do. I hadn’t really wanted to go shopping because I didn’t feel up to it, but I knew I needed some winter shoes and clothes. To realize that I couldn’t even go to 2 stores before my central nervous system just shut down on me was so hard. I tried to calm down by telling myself that if I physically felt like shopping then I wouldn’t be out here getting IV treatments in the first place! However, that didn’t help much. I just kept feeling like all these infections (Lyme Plus as my doctor calls it) have stripped me of things I love to do and kept me from living my life as I want. The noise sensitivity has kept me from being around all my sweet nieces and nephews and I no longer enjoy the sound of kids playing so I have missed out on a lot with family and a lot with my friends and their children. I cried and I went to bed that night around 6:00 and didn’t even wake up to eat dinner. I was too busy feeling sorry for myself and I didn’t want to see the “positive side” of things at the moment.
Sunday I read some more from my “100 Days in the Secret Place” book and realized how much I have left to learn. I don’t know why I think I will ever “know it all” because I’m only human and we all have so much left to learn. I have said I know that God led me here and that God is with me through all of this. But I don’t believe I really understood those statements fully before this weekend. Here’s a section of what I read that seemed to reach down and make me realize how silly I was being:
“The best place to be is where God puts you. Any other place is undesirable because you chose it for yourself. Do not think too much about the future. Worrying about things that haven’t happened yet is unhealthy for you. God Himself will help you, day by day. There is no need to store things up for the future. Don’t you believe that God will take care of you?
A life of faith does two things: Faith helps you see God behind everything that He uses. And faith also keeps you in a place where you are not sure what will happen next. TO have faith you cannot always want to know what is happening or going to happen. God wants you to trust Him alone from minute to minute. The strength He gives you in one minute is not intended to carry you through to the next. Let God take care of His business. Just be faithful to what God asks of you. To depend on God from moment to moment – especially when all is dark and uncertain – is a true dying to your old self. This process is so slow and inward that it is often hidden from you as well as others. When Gods takes something away from you, you can be sure He knows how to replace it. There is a story that when Paul was alone in the desert, a raven brought him half a loaf of bread every day. If Paul’s faith had wavered and he wanted to be sure to have enough, he might have prayed that the raven would bring enough for 2 days. Do you think the raven would have come back at all! Eat in peace what God gives you. “Tomorrow will take care of itself” (see Mt 6:34). The One who feeds you today will surely feed you tomorrow.” – Archbishop Fenelon of France
Now, I read that and realized that there are MANY things I have learned to give over to God, but I was planning on handling my winter clothes myself, thank you very much. It may sound stupid or silly, but when I read that I realized that maybe the reason my shopping trip wasn’t lucrative was because I hadn’t prayed about it. Some of you may think praying for a shopping trip might be silly – and maybe in your situation that’s true. However, I am learning every single day that God is stripping me of all my old ways and wanting to be a part of EVERYTHING I do on a daily basis. He wants me to talk to Him about ALL my thoughts and He wants me to pray to Him for help on ALL my decisions – the small ones & the big ones.
So, I prayed that night. I told a friend in treatment about this prayer and it made her laugh – and it made me laugh after I said the words, but it’s what happened. I told her I prayed, “God, I don’t want ‘cool clothes’, I just need some warm clothes for winter! Can you help me with that?” But we laughed because we knew how true it was that we need help from God with the simplest tasks in order to get them done. However, my prayer was actually more like this, “Dear God – you know how worried I can get. My brain seems to go in search of things to worry about even though I know You will take care of all my provisions. I didn’t come to You before I went on my shopping trip yesterday because I didn’t think about bringing that before you. I’ve never thought that praying about a shopping trip would be something I should do. However, I see now that there is so much I never knew about things you wanted me to do and how you wanted me to do them. God, I am not asking to find ‘cool clothes’ – I just really need to feel like I have some cold weather essentials like long sleeve shirts that have sleeves large enough to come up above my PICC line. I need some sort of hat and scarf because I already have my winter jacket up here. I REALLY need some warm boots that I have no heel and that don’t zip or tie because putting shoes on is hard for my hands and hard for me to bend over to fasten them. I want to be able to slip them on and off easily during treatment. I need some leggings and socks that will keep me warm as well. I have tried very hard to learn to give control of my life over to You. I am constantly trying to not question Your will every step of the way and especially during my setbacks. I don’t know if praying for a shopping trip is even right, but I feel that I have to come to You with all things now. I also am praying because I don’t want to spend a lot of money on these things because medical costs are high enough. Now I know I need to pray to You for the strength to even go shopping and I know I can’t shop for these things over the internet because I wouldn’t be able to tell if the clothes felt soft and comfortable, or if they fit, or if they would work with my PICC line. So I’m praying that You allow me to find some of these things so that I can feel more prepared to stay where You clearly want me to be right now, which is here in Kansas City.”
The next day I packed my ear plugs and my MP3 player. I printed out a map of the mall in Kansas (about 12 miles away) where Mom and I were headed. I even highlighted the 4-5 stores I thought we needed to hit to get what I was looking for. I was a woman on a mission. I knew I only had about 2 hours of energy (if that much) to get this done and then I would collapse and be exhausted. Funny thing about praying to God about even the smallest things is that He does care. He wants you to bring everything before Him. My trip yesterday was a complete success. I got WARM boots with fuzzy lining and they even fit my narrow feet. They slip on and off with no problems and were more than $100 off from their original price. They were also the only pair of boots like that in all of the sale rack & were just my size. I said, “Thank you Lord” and I bought them. Then I found 3 pairs of knee socks on sale and knee socks help keep my legs warm since I have such trouble with my circulation and stay so cold. I also found not 1 but 2 pair of leggings that can be worn alone with oversized sweaters or worn underneath pants almost like long underwear. Those weren’t on sale, but they were still pretty cheap. I found a very soft and large scarf. The kind you can wrap around your neck and down around your shoulders. I will probably even use that during treatment because it felt so good – and it was on a great sale too! I found a hat for cheaper than any of the other hats I had seen. I found 3 long sleeve cotton shirts that I can layer but that all have enough stretch in the sleeves to pull above my PICC line. And I found a really comfortable sweater/coat. It’s long and comes close to my knees and has a hood and buttons up the front. The sleeves are large enough for my PICC line and it is soft and machine washable (no dry cleaning needed here). When I get back to Alabama I could probably use it as a coat!
Now, all of this was done in under 2 hours and I couldn’t for the life of me tell you how that happened except that God showed me where to go to get the things I needed. When we got to the car I looked up and simply said, “Thank you God for allowing me to find things I need for the colder months out here.” Mom smiled and inside I knew that God wasn’t worried about my shopping trip. I think He wanted me to know that He understood my desire to feel prepared. Everything else here has happened so quickly and I’ve been unprepared or ill prepared for it all. I have handed so many things over to Him after struggling about what to do in different situations. I knew that He was allowing me to have a peaceful feeling about being here longer than I had planned and I know He wanted me to realize yet again, that I must come to Him for EVERYTHING!
That example is just one of many. God provides for us. God loves us. God cares about the cares of our heart and wants us to know that we may count on Him for ALL things. So I will not worry about tomorrow and starting the antioxidant IVs. I will not worry about next week and starting the difficult treatment for Babesia. I trust God will be with me every step of the way and I know that while I may be scared for a moment, I will remember and feel His presence and in His presence fear slips away like a thief in the night.
Now I will close yet another lengthy entry with a few quotes:
“Why would God promise a refuge unless He knew we would need a place to hide once in a while?” Neva Coyle
“Trials may come in abundance. But they cannot penetrate into the sanctuary of the soul when it is settled in God, and we may dwell in perfect peace.” Hannah Whitall Smith
“The Lord alone shall be exalted” Isaiah 2:11 (KJV)
Thank you Lord for allowing us to cast all our cares upon You and for allowing us to feel Your love and comfort when we seem so lost. I trust in You for everything and will try harder each day to give every single worry over to You. I have no need for worries. They will only hamper my progress. You ask that I hand them all to You and so this is my goal, to follow what You want me to do. Thank you for giving me signs (both big and small) throughout this journey as I continue to fight these battles for my health. Thank you for blessing me with treatment friends who understand that a successful shopping trip is like a miracle in itself. Thank you for all the many people out there praying for me and I pray that they too feel Your love and comfort every day.
I’m also praying right now for a very close friend whose Grandmother is ill and who is on her way to see You. She has said she is ready to “come home” and I know Heaven will rejoice when she arrives. I pray for the family left behind on earth who will miss her because she is such a loving and wonderful woman. I pray that they envision her getting to Heaven and seeing her husband (who passed years ago) smiling with excitement to be reunited with her. That’s how I picture her – smiling and laughing and just so happy to be with her Lord and Savior and with all those who passed before her.
Much love to you all!
Tuesday, September 1, 2009
The good news and the bad news...
I had my appointment this evening with my IV doctor. I knew that with all the set backs I have had (kidney stones, emergency surgery, etc.) that we had not been able to make the progress we had originally hoped for back in early June. Back then the plan was to treat me with the IVs for 3 and 1/2 months, then re-test and see if my body was making progress and if I was knocking out all these chronic infections. We knew that the plans would change, I mean, you can't predict how your body will react to treatment. Plus, they think a lot of these infections have been living in my body for 30 years hiding in that sneaky biofilm. Had ANY doctor in Alabama ever been able to properly diagnose me with - much less treat me for - all these infections (Lyme, Bartonella, Influenza A, Whooping Cough, Chronic Mono, Chronic Strep, etc.) then I could have started treatment years ago. However, that makes no difference because it didn't happen. So, my whole body has been getting worse each and every year. Had I not gotten here when I did, who knows, my heart may have just given out because it was having to work so hard and it was wearing itself out.
Good news is that treatment is working and I am breaking down the biofilm in my blood that allows all these nasty things to hide out in. As the biofilm breaks down we knew there may be more infections that would come out. Basically my blood tests had been negative for a lot of things because the infections were protected by that biofilm.
Bad news is that after 5 or 6 tests for Babesia that all came back negative, we finally broke down the biofilm enough so that my most recent test was positive for Babesia & it came out fighting mad. Babesia is rough. It can make you feel extremely angry, upset, anxious, nervous, etc. and it causes a lot of bone pain (which I have been having for a long time but they couldn't figure out why). The bad news is that no medications work on these symptoms - Valium and Ativan won't help me feel less anxious because they don't work on Babesia. Narcotic pain killers won't stop the bone pain either. You just have to kill off the Babesia in order to get rid of the symptoms. The treatment is hard because of the medication for it has to be taken twice a day but spaced 12 hours apart & you can't take it within 1 hour of ANY other medications (other prescriptions, supplements), not even IV meds. So we'll have to find a way to fit that in somewhere. We won't be treating it for another 2 weeks though because the doctor wanted to wait a full 6 weeks from my surgery before we push my body any further.
Now, here is the part I expected all along, but had hoped wouldn't happen. Normally I would be getting all those re-tests done in a couple of weeks since I will have been in treatment a little over 3 months by then. However, there's no point in doing those tests then because we haven't been able to get enough of the meds in me to really make a big difference. The tests cost money and many aren't always by insurance so I'm glad the doctor realizes we don't want to waste money on tests if they know the tests won't show much change. Bad news is my new date for re-testing is now mid-November. So, another 2 months in Kansas City doing IVs and taking pills.
I wish I could tell you that I truly believed that the tests in November would show amazing progress and I would be home by early December. But, I know my body pretty well and while I KNOW that with God anything is possible, I also know how sick I am and how difficult it has been to treat me because these "bugs" have made a stronghold inside my body. I know God is with me now - I know He has great things in store for me - and I know I trust His plan. I don't like the idea of staying up here for a long time, but I do like the idea of regaining my health. God lead M & I here, to Kansas City, to this doctor so that I could be healed. So, I can't complain if I don't think God's working fast enough!!! We prayed dilligently about all of this and tried to follow where God was leading us and we trust that He will lead me back home in His perfect timing. He will get me back to my sweet husband, family and friends and when He does, I bet I feel better than I have in YEARS!
Oh, I still have the flu. I am knocking the numbers down though. For Influenza A to be considered "active" the ratio has to be higher than 1:8. Originally I was 1:64 and after 5 rounds of Relenza I am now 1:32!!! Also, my blood levels are ALMOST normal. I'm 11.1 as of last Tuesday and the normal range starts at 12. Remember that just 4 weeks ago post surgery I was dangerously close to getting down in the 6's so this is a BIG deal.
Other good news is that my electrolytes are back to normal, my potassium and my Vitamin D are both normal now, and I think she said my B-12 is normal now too. This means things are working. Treatment IS working - it just can't be rushed. Oh and I am going to try taking the IV antioxidants again on the 9th. They took me off of them after the first week due to nausea but I am hoping that I can handle them now. They are like supplements and can help me strengthen my immune system to fight even better.
I'll write more later when I've wrapped my brain around all of this more. I recorded the session with the doctor and will have to listen to it tomorrow to make sure I understood it all. I had been really hoping to not have to deal with Babesia so after I found out I had it, well, I think I zoned out a little for the remainder of the meeting just trying to focus on what the next step would be.
I love you all and I ask you to please pray for my mental strength as well as my physical strength. I had an episode this weekend where I felt such rage and anger and I knew there was no logical reason for me to feel that way. It scared me though because even though I knew it wasn't logical, I also couldn't seem to control it. Turns out that was the Babesia rearing its ugly head. So I pray that God keeps me from acting on these feelings and that He keeps my bone pain from getting any worse. I know I can handle this - I am a fighter & with God fighting my battles, there's no way I can lose.
I'll close with the sweet scripture verse my friend Christy sent to me today:
"The Lord will sustain him on his sickbed and restore him from his bed of illness." Psalm 41:3
Good news is that treatment is working and I am breaking down the biofilm in my blood that allows all these nasty things to hide out in. As the biofilm breaks down we knew there may be more infections that would come out. Basically my blood tests had been negative for a lot of things because the infections were protected by that biofilm.
Bad news is that after 5 or 6 tests for Babesia that all came back negative, we finally broke down the biofilm enough so that my most recent test was positive for Babesia & it came out fighting mad. Babesia is rough. It can make you feel extremely angry, upset, anxious, nervous, etc. and it causes a lot of bone pain (which I have been having for a long time but they couldn't figure out why). The bad news is that no medications work on these symptoms - Valium and Ativan won't help me feel less anxious because they don't work on Babesia. Narcotic pain killers won't stop the bone pain either. You just have to kill off the Babesia in order to get rid of the symptoms. The treatment is hard because of the medication for it has to be taken twice a day but spaced 12 hours apart & you can't take it within 1 hour of ANY other medications (other prescriptions, supplements), not even IV meds. So we'll have to find a way to fit that in somewhere. We won't be treating it for another 2 weeks though because the doctor wanted to wait a full 6 weeks from my surgery before we push my body any further.
Now, here is the part I expected all along, but had hoped wouldn't happen. Normally I would be getting all those re-tests done in a couple of weeks since I will have been in treatment a little over 3 months by then. However, there's no point in doing those tests then because we haven't been able to get enough of the meds in me to really make a big difference. The tests cost money and many aren't always by insurance so I'm glad the doctor realizes we don't want to waste money on tests if they know the tests won't show much change. Bad news is my new date for re-testing is now mid-November. So, another 2 months in Kansas City doing IVs and taking pills.
I wish I could tell you that I truly believed that the tests in November would show amazing progress and I would be home by early December. But, I know my body pretty well and while I KNOW that with God anything is possible, I also know how sick I am and how difficult it has been to treat me because these "bugs" have made a stronghold inside my body. I know God is with me now - I know He has great things in store for me - and I know I trust His plan. I don't like the idea of staying up here for a long time, but I do like the idea of regaining my health. God lead M & I here, to Kansas City, to this doctor so that I could be healed. So, I can't complain if I don't think God's working fast enough!!! We prayed dilligently about all of this and tried to follow where God was leading us and we trust that He will lead me back home in His perfect timing. He will get me back to my sweet husband, family and friends and when He does, I bet I feel better than I have in YEARS!
Oh, I still have the flu. I am knocking the numbers down though. For Influenza A to be considered "active" the ratio has to be higher than 1:8. Originally I was 1:64 and after 5 rounds of Relenza I am now 1:32!!! Also, my blood levels are ALMOST normal. I'm 11.1 as of last Tuesday and the normal range starts at 12. Remember that just 4 weeks ago post surgery I was dangerously close to getting down in the 6's so this is a BIG deal.
Other good news is that my electrolytes are back to normal, my potassium and my Vitamin D are both normal now, and I think she said my B-12 is normal now too. This means things are working. Treatment IS working - it just can't be rushed. Oh and I am going to try taking the IV antioxidants again on the 9th. They took me off of them after the first week due to nausea but I am hoping that I can handle them now. They are like supplements and can help me strengthen my immune system to fight even better.
I'll write more later when I've wrapped my brain around all of this more. I recorded the session with the doctor and will have to listen to it tomorrow to make sure I understood it all. I had been really hoping to not have to deal with Babesia so after I found out I had it, well, I think I zoned out a little for the remainder of the meeting just trying to focus on what the next step would be.
I love you all and I ask you to please pray for my mental strength as well as my physical strength. I had an episode this weekend where I felt such rage and anger and I knew there was no logical reason for me to feel that way. It scared me though because even though I knew it wasn't logical, I also couldn't seem to control it. Turns out that was the Babesia rearing its ugly head. So I pray that God keeps me from acting on these feelings and that He keeps my bone pain from getting any worse. I know I can handle this - I am a fighter & with God fighting my battles, there's no way I can lose.
I'll close with the sweet scripture verse my friend Christy sent to me today:
"The Lord will sustain him on his sickbed and restore him from his bed of illness." Psalm 41:3
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