I haven’t written in awhile, but for the first time it hasn’t been because I’ve been too busy having seizures. My sweet husband came up 2 weeks ago so that mom could go home for a week. Bless my mom’s heart but her week home that was supposed to be a “break from the stress” was stress in itself. My grandmother had a “mild heart attack” but at the age of 91 I just don’t think there is a “mild heart attack”. She was in the hospital almost the entire week. The night she was admitted one of my aunts passed out and had to be put in the bed next to my grandmother and be given IV fluids for 5 hours or so before being released. My other aunt came into town to help out and stayed with mom when she started not feeling so well and they checked her blood pressure and it was too high. So my mom took her to the ER and they administered some medication and she had to go back home to get a stress test & heart work up done with her doctor.
So, my sweet husband realized my sweet mother needed more time at home. He rearranged some things so that she could have until today (instead of last Monday) to come back. She was able to make sure my grandmother got back to her “assisted living facility” although for the next week or so they’ll have her in the real nursing home area to keep watch over her and make sure she gets the medication she needs. She’ll also be doing some therapy and hopefully will be back in her regular room very soon. I ask all of you to pray for my family as they have gone through so much in the past two weeks. I hate to have to depend on mom to come here and take care of me, but unfortunately I can’t take care of myself so it’s a necessity.
Now, good news for me so far is that the new antibiotic, Clindamycin, seems to be working well without giving me seizures. We had hoped that by killing off infections and changing antibiotics that my seizures wouldn’t be near as frequent and definitely not as severe. I can still expect a few as we continue to try and kill off the Babesia, but as long as they are every few weeks instead of a few every week then I think I’ll be able to handle that much better. Now, each antibiotic has its’ own side effects and none of them are great, but the Clindamycin is only causing frequent trips to the bathroom (trying to not give “too much info”) and it leaves an unpleasant taste in your mouth. That’s one of the weird things about PICC lines I think, that whatever goes into your line you can taste in your mouth. Weird, I know, but true and it isn’t a horrible taste so I’m good if I have a cough drop to cover it up.
Outside of being worried for my extended family, I personally have had a couple of good weeks relatively speaking. I am able to get on the computer and not get an instant headache which allows me to feel so much more connected to friends and family. My noise and light sensitivity are definitely still with me, but they are nowhere near as severe as they had been. I still have to wear my headphones and I have trouble if more than 1 person is trying to speak to me, but before even with earplugs and headphones I felt like an ice pick was being driven through my head. The pain was excrutiating whether it was from light or the slightest sounds. I hated it for me but even more so for those around me who tried so hard to keep their voices low, their motions quiet, etc. When you are so very sensitive it is hard to understand yourself and even harder to explain to others how throwing something in a trash can sounds like a bomb going off in your head. So, while I’m still sensitive to all that, it isn’t driving me insane anymore, or at least not any more insane than I was before.
I’ve been talking with God. I’ve been thanking Him everyday for keeping me seizure free and for granting me this respite, even if for a short while. This antibiotic will build up in my system and it will be killing off things like the Doxy was so there’s no question that I will “herx” on it (Herxheimer reaction – just means symptoms get a lot worse or you have symptoms that you didn’t have before due to toxin build up in your blood). The question is, just how bad will this “herx” be? So far I have noticed the joint pain being worse and feeling more exhausted but I feel those are things I can handle because, for right now, and this is a “moment to moment” type thing during this process, I feel better than I did when I got here in June. I can take pain, in fact I even passed a kidney stone last week and still went to treatment, and I can handle upset stomach and body aches and pain. It’s just how much of those and in what combination can I handle them? Only time will tell.
I said I’ve been talking to God, and I have. However for now, He seems to be keeping quiet and I don’t hear Him as clearly. Maybe I don’t need to hear Him as clearly as I did when I was in such bad shape. Maybe He moves away at times just to have us go in search of Him – to continually seek Him. I always seem to feel distant from Him right before I go through a state of spiritual growth. He may be waiting for me to come to Him when that herx finally hits. He may be letting me enjoy just a couple of weeks of semi-normal life. He may just be smiling down on me, knowing that I give Him all the praise and glory for ANY and ALL improvements where my health is concerned and definitely where my state of mind is concerned. I will say that He used my oldest niece to communicate with me this week. I guess I had been in the “poor pitiful me” state for awhile (before the antibiotic change) and I had been wondering why God led me to start this blog, if anyone was reading it, if it was really helping anyone. Then my niece made me a video. When she sent it to me I really expected a video of her or her sister dancing or singing. I expected something funny to lift my spirits, but I got so much more. I got to see why God led me to write this blog. I got to see that if the only person that my words touch is my niece who started high school this fall, who is about to go through those difficult teen years, if all of this was only to touch her heart and lead her closer to God, well, I would not consider my pain and suffering to be for nothing. In fact, I would consider them to be a price well worth paying for the reward of seeing this beautiful, smart and talented young lady learn to cling to God in both the good and bad times.
I asked her if it would be okay if I shared this video with you all and she said yes. In fact, she refused to take credit for her when I told her how much it touched me. She told me “something” pulled at her when she read my last entry and that she “knew that something was God”. She said she couldn’t take credit for the words she wrote in the beginning or how it came to be because God lead her to make it. Now, my friends, that is when my heart truly overflowed with love for Him and love for her and the love of knowing she “hears Him” in her life already. Thank you God for always working in our lives , for doing what we need instead of what we always want. Thank you for this 2 week break from seizures and horrible headaches. Thank you for all you have done so far and all I know you will continue to do in my life I if I continue to pray for YOUR will to be done. Thank you, Lord, for every good thing on this earth and thank you for using my beautiful niece to make me feel like what I am doing here is important on levels that I cannot and will probably never comprehend. In fact, maybe He has allowed me to “find” something after all of the “seeking” I’ve been doing the past 7-8 months. He just gave it to me in a different format than I expected, but aren’t His ways always so much better than ours? Seek and ye shall find. I have found so much through this, a much closer relationship with God, a better understanding for what “real love” is about, a daily reminder of all the sacrifices my husband and family are willing to make in order to get me healthy. I’ve found more than I ever dreamed I would, and I feel there will always be more to find if I continue to seek Him.
Here’s the video. Oh, and my name isn’t Kate. There’s a long story to how I got to be called “Aunt Kate” since it isn’t even a shortened version of my real name, but I’ll spare you the long story & just say that’s what they call me and I love to hear them say it.
http://www.youtube.com/watch?v=6gS3HyF30mI
Much love to you all and here's a few good scripture verses before I go:
“God has given us these times of joy.” Psalm 81:4 TLB
“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up, do you not perceive it?” Isaiah 43:18-19 NIV
“What a wonderful God we have – he is the Father of our Lord Jesus Christ, the source of every mercy, and the one who so wonderfully comforts and strengthens us in our hardships and trials.” 2 Corinthians 1:3-4 TLB
Saturday, January 30, 2010
Monday, January 18, 2010
Patience, Progress & Praising God
Okay, so first I will say that the past two weeks were a nightmare. I had 4 seizures in 8 days. Last week I had 1 on Tuesday that lasted about an hour and a half and then had another the very next afternoon for 45 minutes. They were hard and they caused me to be really sore, but thank the Lord, no falls, bumps or bruises this time - YAY! However, I was getting so tired and honestly, so depressed about having to go through all of it. I was beginning to think that I would never see any progress and only continue to suffer. God got to me with His whispers every day though, telling me He was with me, telling me to have faith, telling me that He would be my Healer, my Comforter and He would fight when I was too tired to do so.
I cried one night wanting to quit all of this, pack up the car and head back home. I was angry about the seizures, about how 4 different anti-seizure drugs and 1 muscle relaxer were not keeping these seizures away. As soon as I had moaned (very loudly might I add) to my mom, I walked out onto the screened in porch and God hit me over the head with His wisdom. He convicted me of being ungrateful. I was being ungrateful because I wasn't "setting my mind on things above" (Col. 3:2). I prayed for a doctor who could tell me what I had and who could treat me and God lead me here to Kansas City to a doctor who could do just that. I never asked Him to make my healing easy, or to make me well super fast. So, I had to realize how my timeline was not going to be the same as God's perfect timing. I was going to have to be patient. He's also been telling me to give up control and let Him carry out His will as I hand my worries and fears over to Him. So I prayed. I prayed hard and I meditated on Him, just listening for Him to speak to my spirit. He did and I listened as He told me to cast ALL my cares on Him.
My doctor's meeting was yesterday and I prayed that God would give the doctor wisdom about the seizures, and everything else. I also prayed that He would take the worry from both my heart & M's heart as we went in to find out results of yet more and more blood work. He lifted that worry from us and we felt an odd sense of peace before the meeting when we normally would be anxious and nervous. Before we went I read to M the verses from my daily calendar. Saturday's verse was:
"Ask and it will be given to you, seek and you will find, knock and the door will be opened to you." Matthew 7:7 (NIV)
I thought, "WOW - I am asking God for peace and He is giving it to me!" Yesterday before the meeting I flipped the calendar again and read:
"I am with you and will protect you wherever you go." Genesis 28:15 (TLB)
I must say I teared up a little thinking about how God has been ever present with me as I have endured so many trials. I thought about how as the doctor had said the seizures could be triggered by such things as the television, the computer, and even talking on my cell phone. I felt stripped of all the things I normally would use to distract myself. I had NOTHING I could do until I realized God was using this time for me to realize I did have something to do - I had to meditate on His word and His promises. I did that as much as I could but I'm not perfect and I must say how much I missed my "lifeline" to the outside world...i.e. my computer! Don't worry about me writing this though because I have been on a 3 day break from treatment to allow my body to rest and so it doesn't bother me for now to be on here this short while.
Now, the good news!!! In my meeting we found out that I got rid of Rocky Mountain Spotted Fever - YAY!!! When I came here the doctor said I likely had it even though my tests were negative. Apparently in November some more biofilm broke out and I tested positive for it after 3 negative tests! Now it is gone and I can get off of my current IV antibiotic and change to one that will hit the Babesia which is the main cause of my seizures. This is the first really BIG progress I have made. Just by knocking that out my C4A test went from 4,400 (something) to 2, 400 (something). That is a test that basically just shows how overloaded your immune system is. Normal should be around 1,2oo so I still have a way to go but WOW what a difference it made in just 6 weeks! PRAISE THE LORD!!!!
So now my dear friends we can say THANK YOU to God for being my Healer! He is using my doctor as His tool for His healing!!! I still have a way to go but this progress makes me realize I need to continue have patience because God's timeline is not the same as ours! I continue to lean on Him and thank Him for every day I have to continue this fight, knowing He goes before me in all things!
Much love to you all and I thank you all for your prayers because they are being answered...slowly but surely God is answering each one of your prayers. Praise Him today for the good things He has surrounded you with - pray with THANKSGIVING my friends because we all have things we take for granted that we need to tell God THANK YOU for don't we?? :)
I cried one night wanting to quit all of this, pack up the car and head back home. I was angry about the seizures, about how 4 different anti-seizure drugs and 1 muscle relaxer were not keeping these seizures away. As soon as I had moaned (very loudly might I add) to my mom, I walked out onto the screened in porch and God hit me over the head with His wisdom. He convicted me of being ungrateful. I was being ungrateful because I wasn't "setting my mind on things above" (Col. 3:2). I prayed for a doctor who could tell me what I had and who could treat me and God lead me here to Kansas City to a doctor who could do just that. I never asked Him to make my healing easy, or to make me well super fast. So, I had to realize how my timeline was not going to be the same as God's perfect timing. I was going to have to be patient. He's also been telling me to give up control and let Him carry out His will as I hand my worries and fears over to Him. So I prayed. I prayed hard and I meditated on Him, just listening for Him to speak to my spirit. He did and I listened as He told me to cast ALL my cares on Him.
My doctor's meeting was yesterday and I prayed that God would give the doctor wisdom about the seizures, and everything else. I also prayed that He would take the worry from both my heart & M's heart as we went in to find out results of yet more and more blood work. He lifted that worry from us and we felt an odd sense of peace before the meeting when we normally would be anxious and nervous. Before we went I read to M the verses from my daily calendar. Saturday's verse was:
"Ask and it will be given to you, seek and you will find, knock and the door will be opened to you." Matthew 7:7 (NIV)
I thought, "WOW - I am asking God for peace and He is giving it to me!" Yesterday before the meeting I flipped the calendar again and read:
"I am with you and will protect you wherever you go." Genesis 28:15 (TLB)
I must say I teared up a little thinking about how God has been ever present with me as I have endured so many trials. I thought about how as the doctor had said the seizures could be triggered by such things as the television, the computer, and even talking on my cell phone. I felt stripped of all the things I normally would use to distract myself. I had NOTHING I could do until I realized God was using this time for me to realize I did have something to do - I had to meditate on His word and His promises. I did that as much as I could but I'm not perfect and I must say how much I missed my "lifeline" to the outside world...i.e. my computer! Don't worry about me writing this though because I have been on a 3 day break from treatment to allow my body to rest and so it doesn't bother me for now to be on here this short while.
Now, the good news!!! In my meeting we found out that I got rid of Rocky Mountain Spotted Fever - YAY!!! When I came here the doctor said I likely had it even though my tests were negative. Apparently in November some more biofilm broke out and I tested positive for it after 3 negative tests! Now it is gone and I can get off of my current IV antibiotic and change to one that will hit the Babesia which is the main cause of my seizures. This is the first really BIG progress I have made. Just by knocking that out my C4A test went from 4,400 (something) to 2, 400 (something). That is a test that basically just shows how overloaded your immune system is. Normal should be around 1,2oo so I still have a way to go but WOW what a difference it made in just 6 weeks! PRAISE THE LORD!!!!
So now my dear friends we can say THANK YOU to God for being my Healer! He is using my doctor as His tool for His healing!!! I still have a way to go but this progress makes me realize I need to continue have patience because God's timeline is not the same as ours! I continue to lean on Him and thank Him for every day I have to continue this fight, knowing He goes before me in all things!
Much love to you all and I thank you all for your prayers because they are being answered...slowly but surely God is answering each one of your prayers. Praise Him today for the good things He has surrounded you with - pray with THANKSGIVING my friends because we all have things we take for granted that we need to tell God THANK YOU for don't we?? :)
Wednesday, January 6, 2010
Groaning instead of gratitude...
It's been a rough few weeks. I'm going to vent a little (hence the first part of the title) because sometimes it's when I "groan to God" that He shows me why I should change my attitude and then He has to show me HOW to change my attitude. I feel like I've learned a lot about keeping a positive attitude, but we all have those days (or weeks sometimes) when being positive seems like the last thing we can do - or even want to do. I think everyone can relate to the desire to "wallow" in their own misery thinking, "Why me?" or "Why now?" or just "WHY???". So, I pray that as I write out my own groans, my health update, etc. that God will show me yet again how to go through this battle with His joy in my heart and how to keep that joy flowing outward to others.
First, another seizure and this one was a hard one. Not that any of them are "easy" but this one lasted longer and was a bit harder to get through. I took some anti-seizure medication that melts in my mouth (getting into my blood stream faster) as soon as the tremors started, but it wasn't fast enough. After 20+ minutes of having the seizure go from tremors into a grand mal I took more of the "melt in your mouth" medication. I prayed out to God that I was thankful yet again that this all happened at the clinic, that I had sweet nurses taking care of me, that I have a wonderful friend in treatment, Stef, who sat by me praying and holding my hand when I wasn't shaking it everywhere. She prayed silently, but I felt it and I knew it. I have to pray out loud because it helps me to focus so that I don't lose consciousness. So, I told God that if it was His will for me to have this seizure, if there was something that He had in His plan, then I wanted to follow His will.
I think He did have it in His plan for me because for the first time I stayed in my own chair and the nurses were able to get my vitals towards the end of the seizure. They haven't been able to get that information before so I hope that it helps the doctor to have it. My blood pressure (which is normally around 90/60) was around 160/70 and my heart rate varied from 140 - 170 as I bucked and jerked around. I honestly think this time I looked like I was riding an invisible bull. My right arm kept violently circling over my head which was odd, but nothing about seizures are ever really "normal" I guess. My seizures seem to always start with my right hand and then go up that arm, to the head, down my body and then back up my body and the last thing to stop shaking is usually my right arm. Weird how they seem to have a pattern to them, but it seems to help me to know when they might be calming down. A few times my oxygen level would drop down into the upper 80s when my back would arch and my body just didn't want to breathe. I have to focus very hard to make myself get air. I pray, I find places on the wall to stare at and focus on, and most of all, when I can speak, I make jokes. Although I stutter a lot, I seem to get the jokes out okay.
I know it may sound odd that I joke, but talking helps me to keep myself breathing, focused, and it helps me to lighten the mood in my own mind. I feel that the devil will use whatever tools he has at his disposal to get into our brains and believe me, a seizure is like a big old party that he can use to make you think scary thoughts, angry thoughts, or just plain "mad at God" thoughts. Which is why I pray with prayers of thanksgiving. If you thank God for all the good things in the midst of an assault by the devil, well, the devil just cannot stand that. I also try not to ask God to stop things, but to give me the strength to endure whatever His will is for me at that moment. He always does. Yesterday we joked about what an amazing cardio workout a seizure is, how the tightening and relaxing of muscles can give you great abdominal muscles, etc. I don't like to see "worried faces" when I have a seizure. I like to see laughter and smiles because the more I sense someone worrying, the worse the seizure will get for me because I focus more on them than on how to get my brain under control. I've been sick a long time and learned that you have 2 options - you can laugh, or you can cry. That really pertains to life in general - come home to a leaky roof? Laugh or cry - your choice. Car breaks down in the rain and you have no idea how long the tow truck will take to arrive? Laugh or cry - always your choice.
Now, please understand that everyone has a "cry day" or one where they just cannot muster up the mindset for laughter. I'm the same way, but I learn more every day how to laugh when I really want to scream in frustration. I have said before how I KNOW I am here for a reason, God led me here for a reason, and I'm not sure what that reason is, but I feel that part of it is to try and be positive no matter how bad I may feel. But today, the day after the seizure, the day my body is so very sore and I have a bit of a fever - well, I was in a better mood having the seizure than I have been in today I think. Maybe because today would have marked two weeks from my last seizure. It seemed the "melt in my mouth" medicine that I take before and after each treatment session was working fairly well. It still is in a way, but my central nervous system is just so easily overloaded. The doctor talked to me on Monday and we are now thinking that the Babesia is not just tearing the red blood cells but it's building up toxins in my brain. I started a new supplement yesterday morning that helps the brain "detox" and will hopefully help keep my brain from holding onto those toxins.
Okay, so I am back into the swing of things with treatment after holiday breaks. I had almost 4 whole days off for Christmas and then 3 days off for New Year's. I realized how hard breaks are for me right now though. Thankfully when I am off the medicine my light and sound sensitivities are much less severe, but it just makes starting treatment again a little harder. I got to feel a bit like the "old me" - even though it was still the "tired, old me" - it was nice. The holiday breaks aren't the only breaks we've had though, unfortunately. We had 6 to 8 inches of snow on Christmas Eve. It sounds so beautiful and magical until you realize you are basically trapped in a small apartment with winds howling and snow blowing everywhere. I don't think I will ever feel the same when I hear Bing Crosby sing, "I'm dreaming of a white Christmas" - it definitely didn't make my days merry and bright - ha! The weather has been horrid here. I believe the highest temperature we've had since Christmas Eve has been 20 degrees. I'm getting adjusted to the cold finally though and I guess that's what happens in life - you can adjust to about anything. Then last Tuesday it snowed and treatments were cancelled on Wednesday. We tried to schedule a treatment for Sunday afternoon and honestly I cannot remember if we had to cancel that one too or not. We were supposed to have just one treatment on Monday, but due to all the inclimate weather cancellations, the doctor had us change to 2 treatments. One day I went outside and the temperature was honestly -1 below zero and wind chills were around -10 below or so.
It's been so cold and today it snowed again. The doctor scheduled an impromptu early afternoon session to keep people from having to drive home in the dark in what the forecasters called "blizzard like conditions". The wind coming with this storm is rough and since none of the snow has even melted due to the extremely cold temperatures, well, it's just blowing around like crazy! OH - I must give a HUGE thank you to a fellow treatment friend who lives in my apartment complex for giving me rides to treatment in his 4 wheel drive Hummer because mom would not be able to navigate these roads! He has been such a help for us and I'm not sure if I would have been able to go without him! Sedans are just not made for this kind of weather. Tomorrow we have a treatment session scheduled for 2:00 p.m., weather permitting. It's hard to be out of the swing of things and you can't help but feel like every missed day is one more day here.
So, seizures, weather hazards, general feeling like crap, still fighting the flu, etc., etc. I could whine a lot but I just realized that each thing I complained about actually had a good outcome in a sense. My seizure was really hard, but I stayed in my chair so no bad bruises or falls AND for the first time they were able to document my vital signs. The weather here has been horrible, but I have been blessed with a very caring friend who doesn't mind waiting an extra 30 minutes in the evenings for my 2 hour IV bag even though his is only a 1 and a half hour bag. So, again, God goes before me. This is only my "temporary life". I have to focus on that. I will get home and I will still be on oral treatments, but I should be feeling a good bit better than I was when I get to come home. Speaking of home - I hated to miss out on a very special day for a very close friend of mine. She had a little girl today and I think her little boy is probably one proud big brother. Mom and baby are doing well and I know Dad is thrilled as well. I cannot wait to see some pictures but I do hate missing out on seeing that newborn little girl in person and welcoming her to the world. Bad day to start out with, but God showed me once again He is with me, He is fighting for me, He is giving me strength, and even though I'm not at home to witness it, He is showing me His miraculous ways through my sweet friend's new baby. How can you deny God's presence or His existence when you see a newborn baby? It seems quite impossible to me that those tiny babies are anything short of miracles.
I feel better now. God does show me so much as I prattle on and on and you have to read these lengthy entries. He shows me He is still in control and that, my friends, is exactly what I want to hear.
To close a few verses:
"Be self-c0ntrolled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour." 1 Peter 5:8
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12
"Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:4
"Submit yourselves, then, to God. Resist the devil and he will flee from you. Come near to God and he will come near to you." James 4:7-8
Much love to you all. I'm feeling much more gratitude and I think my groaning has ceased for now. I simply have to wake up and choose to ask God to be with me throughout the day, encouraging me, giving me strength and surrounding me with His love. Every day we have that choice and I think we should rejoice that God wants us to spend our days with Him always.
K
First, another seizure and this one was a hard one. Not that any of them are "easy" but this one lasted longer and was a bit harder to get through. I took some anti-seizure medication that melts in my mouth (getting into my blood stream faster) as soon as the tremors started, but it wasn't fast enough. After 20+ minutes of having the seizure go from tremors into a grand mal I took more of the "melt in your mouth" medication. I prayed out to God that I was thankful yet again that this all happened at the clinic, that I had sweet nurses taking care of me, that I have a wonderful friend in treatment, Stef, who sat by me praying and holding my hand when I wasn't shaking it everywhere. She prayed silently, but I felt it and I knew it. I have to pray out loud because it helps me to focus so that I don't lose consciousness. So, I told God that if it was His will for me to have this seizure, if there was something that He had in His plan, then I wanted to follow His will.
I think He did have it in His plan for me because for the first time I stayed in my own chair and the nurses were able to get my vitals towards the end of the seizure. They haven't been able to get that information before so I hope that it helps the doctor to have it. My blood pressure (which is normally around 90/60) was around 160/70 and my heart rate varied from 140 - 170 as I bucked and jerked around. I honestly think this time I looked like I was riding an invisible bull. My right arm kept violently circling over my head which was odd, but nothing about seizures are ever really "normal" I guess. My seizures seem to always start with my right hand and then go up that arm, to the head, down my body and then back up my body and the last thing to stop shaking is usually my right arm. Weird how they seem to have a pattern to them, but it seems to help me to know when they might be calming down. A few times my oxygen level would drop down into the upper 80s when my back would arch and my body just didn't want to breathe. I have to focus very hard to make myself get air. I pray, I find places on the wall to stare at and focus on, and most of all, when I can speak, I make jokes. Although I stutter a lot, I seem to get the jokes out okay.
I know it may sound odd that I joke, but talking helps me to keep myself breathing, focused, and it helps me to lighten the mood in my own mind. I feel that the devil will use whatever tools he has at his disposal to get into our brains and believe me, a seizure is like a big old party that he can use to make you think scary thoughts, angry thoughts, or just plain "mad at God" thoughts. Which is why I pray with prayers of thanksgiving. If you thank God for all the good things in the midst of an assault by the devil, well, the devil just cannot stand that. I also try not to ask God to stop things, but to give me the strength to endure whatever His will is for me at that moment. He always does. Yesterday we joked about what an amazing cardio workout a seizure is, how the tightening and relaxing of muscles can give you great abdominal muscles, etc. I don't like to see "worried faces" when I have a seizure. I like to see laughter and smiles because the more I sense someone worrying, the worse the seizure will get for me because I focus more on them than on how to get my brain under control. I've been sick a long time and learned that you have 2 options - you can laugh, or you can cry. That really pertains to life in general - come home to a leaky roof? Laugh or cry - your choice. Car breaks down in the rain and you have no idea how long the tow truck will take to arrive? Laugh or cry - always your choice.
Now, please understand that everyone has a "cry day" or one where they just cannot muster up the mindset for laughter. I'm the same way, but I learn more every day how to laugh when I really want to scream in frustration. I have said before how I KNOW I am here for a reason, God led me here for a reason, and I'm not sure what that reason is, but I feel that part of it is to try and be positive no matter how bad I may feel. But today, the day after the seizure, the day my body is so very sore and I have a bit of a fever - well, I was in a better mood having the seizure than I have been in today I think. Maybe because today would have marked two weeks from my last seizure. It seemed the "melt in my mouth" medicine that I take before and after each treatment session was working fairly well. It still is in a way, but my central nervous system is just so easily overloaded. The doctor talked to me on Monday and we are now thinking that the Babesia is not just tearing the red blood cells but it's building up toxins in my brain. I started a new supplement yesterday morning that helps the brain "detox" and will hopefully help keep my brain from holding onto those toxins.
Okay, so I am back into the swing of things with treatment after holiday breaks. I had almost 4 whole days off for Christmas and then 3 days off for New Year's. I realized how hard breaks are for me right now though. Thankfully when I am off the medicine my light and sound sensitivities are much less severe, but it just makes starting treatment again a little harder. I got to feel a bit like the "old me" - even though it was still the "tired, old me" - it was nice. The holiday breaks aren't the only breaks we've had though, unfortunately. We had 6 to 8 inches of snow on Christmas Eve. It sounds so beautiful and magical until you realize you are basically trapped in a small apartment with winds howling and snow blowing everywhere. I don't think I will ever feel the same when I hear Bing Crosby sing, "I'm dreaming of a white Christmas" - it definitely didn't make my days merry and bright - ha! The weather has been horrid here. I believe the highest temperature we've had since Christmas Eve has been 20 degrees. I'm getting adjusted to the cold finally though and I guess that's what happens in life - you can adjust to about anything. Then last Tuesday it snowed and treatments were cancelled on Wednesday. We tried to schedule a treatment for Sunday afternoon and honestly I cannot remember if we had to cancel that one too or not. We were supposed to have just one treatment on Monday, but due to all the inclimate weather cancellations, the doctor had us change to 2 treatments. One day I went outside and the temperature was honestly -1 below zero and wind chills were around -10 below or so.
It's been so cold and today it snowed again. The doctor scheduled an impromptu early afternoon session to keep people from having to drive home in the dark in what the forecasters called "blizzard like conditions". The wind coming with this storm is rough and since none of the snow has even melted due to the extremely cold temperatures, well, it's just blowing around like crazy! OH - I must give a HUGE thank you to a fellow treatment friend who lives in my apartment complex for giving me rides to treatment in his 4 wheel drive Hummer because mom would not be able to navigate these roads! He has been such a help for us and I'm not sure if I would have been able to go without him! Sedans are just not made for this kind of weather. Tomorrow we have a treatment session scheduled for 2:00 p.m., weather permitting. It's hard to be out of the swing of things and you can't help but feel like every missed day is one more day here.
So, seizures, weather hazards, general feeling like crap, still fighting the flu, etc., etc. I could whine a lot but I just realized that each thing I complained about actually had a good outcome in a sense. My seizure was really hard, but I stayed in my chair so no bad bruises or falls AND for the first time they were able to document my vital signs. The weather here has been horrible, but I have been blessed with a very caring friend who doesn't mind waiting an extra 30 minutes in the evenings for my 2 hour IV bag even though his is only a 1 and a half hour bag. So, again, God goes before me. This is only my "temporary life". I have to focus on that. I will get home and I will still be on oral treatments, but I should be feeling a good bit better than I was when I get to come home. Speaking of home - I hated to miss out on a very special day for a very close friend of mine. She had a little girl today and I think her little boy is probably one proud big brother. Mom and baby are doing well and I know Dad is thrilled as well. I cannot wait to see some pictures but I do hate missing out on seeing that newborn little girl in person and welcoming her to the world. Bad day to start out with, but God showed me once again He is with me, He is fighting for me, He is giving me strength, and even though I'm not at home to witness it, He is showing me His miraculous ways through my sweet friend's new baby. How can you deny God's presence or His existence when you see a newborn baby? It seems quite impossible to me that those tiny babies are anything short of miracles.
I feel better now. God does show me so much as I prattle on and on and you have to read these lengthy entries. He shows me He is still in control and that, my friends, is exactly what I want to hear.
To close a few verses:
"Be self-c0ntrolled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour." 1 Peter 5:8
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12
"Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:4
"Submit yourselves, then, to God. Resist the devil and he will flee from you. Come near to God and he will come near to you." James 4:7-8
Much love to you all. I'm feeling much more gratitude and I think my groaning has ceased for now. I simply have to wake up and choose to ask God to be with me throughout the day, encouraging me, giving me strength and surrounding me with His love. Every day we have that choice and I think we should rejoice that God wants us to spend our days with Him always.
K
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