Thursday, September 30, 2010

How to get out...

Have you ever found yourself in a situation where you thought to yourself, “How did I ever get here?” I know there’s been plenty of times, and lots of different situations, where I’ve asked myself that question. In reality I should have been asking myself, “How do I get out of here?” I have found that when things get hard it’s a lot easier to sit and think about what could have caused my problems than thinking of an actual solution to them. Over the past few years I have asked myself how I ended up in this bed countless times. This particular situation is different in that I couldn’t help being sick, but the logic is the same. I focused on how “unfair” things were. I thought about how other people had much easier lives. Basically, I felt sorry for myself and I kept thinking about how bad things had gotten. What I didn’t do was stop myself from that train of thought and think, “What do I need to do to get out of here?” because that is the more important question.

I think God has allowed me to go through all of this for many reasons, some of which I will never know. However, I do know some of the things it has made me think about and often times work towards changing. Just for starters, it has changed who I am, how I act, what is important to me, what kind of life I want to lead, and what kind of people I want to surround myself with as I go through this life. Quite simply, I will look back on this time, on these years of sickness, and I will say, “That is when my life changed for the better.” Might sound odd, but I know that I was supposed to go through ALL of this in order to figure out who I was and more importantly, who God wanted me to become. I have to hope and pray daily that I am getting closer to becoming who God wants me to become because honestly, it’s so easy to fall into the trap of feeling sorry for myself. Even when I see so many improvements I often wonder why things aren’t happening faster. I’m like a child who can’t appreciate all the wonderful toys I already have because I’m too busy wanting the toys I don’t have. So, I pray that I am sticking to the physical AND mental course God has set for me so that I don’t skip over anything. God wants me to see how many prayers have been answered for me and some days I am overcome with just how many He has answered. But, I’m human, so on other days I focus on the prayers He hasn’t answered for me. Silly thing to do since you never know what prayers God will answer or, maybe more importantly, WHEN He will answer them.

Robert Frost wrote, “The best way out is always through.” I’ve thought a lot about that quote over the past week or so. I’ve wondered if I’m doing what I need to do, if I’m doing all I can do, to get better sooner. When I’ve suffered a set back, I would feel as if the world was ending and would get so upset. That’s when I thought about the quote from Robert Frost. There is no way to speed things along, there is no magic potion that will have me up and out of this bed and leading a “productive life”. It took years to get that sick, it’s taken a year and a half of treatment to get me feeling half-way human. It only makes sense that I won’t be able to jump up tomorrow, get dressed, and go drive myself somewhere. So, it’s not that the “best way out is always through” – it’s that “through” is the ONLY way out! So, I continue to fight to get better. The fight is getting easier, but sometimes that makes it more mentally frustrating. I am feeling stronger – I do want to go and do a million things – but I simply have to wait and slowly build up my strength. I still have other diseases to fight. I will get there, but not by force. I will get there by faith. I know God can do anything and I know He has led me through all of this. He has not stopped leading me nor will He ever give up on me. I need Him every day. I don’t just need Him for getting me through another day when I feel horrible. I need Him on good days too. But, I always thank Him for getting me through those MISERABLE days. I need to focus more on thanking Him for the “Hey, I don’t feel like death today” days as well.

I’ve had some set backs lately. The anti-parasitic medication has not been easy on me, but I’ve been through much worse for sure. I’ve had more of the fevers again, felt weaker, had to slow myself down and keep myself from trying to “push through the pain”. But, I’m doing so much better than I was 2 months ago. I have to keep reminding myself that it doesn’t happen overnight. It takes time and that’s okay. I need to realize that God has always had a plan for my life and while I may think things are taking too long, He’s always had the timeline planned out. I need to stop thinking about “how I got here”, to stop feeling sorry for myself, to stop comparing my life to the lives of others – in short, I need to just trust God. I guess that’s something we all have to work on doing every day. We like to think we are in control of so much, but in reality, God’s in control and we need to seek His guidance as to how to get through each day.

“I will bless the Lord at all times; His praise shall continually be in my mouth.” Psalm 34:1 (NRSV)

“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NIV)

“I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.” Psalm 4:8 (NIV)

I again want to thank you all for your prayers and for just keeping up with me. The computer is my way of staying connected to the world and I’m glad there are people who want to read my ramblings as I journey along.

Much love-
K

Friday, September 24, 2010

Quick update

I feel bad for not upadting sooner. Just wanted to say I've been doing well - getting out of the bed a lot more, building up muscle mass in my legs! Just being able to do a few things out of the bed perks me up so much! There are still days where I don't get out of the bed - today being one of them - but I feel I'm improving slowly but surely.

The bad thing about these diseases is that once you start feeling stronger there's always another disease you need to hit! So, since I'm tolerating the Gentamicin IVs so well we started me on the supplements Para Cleanse and Colon Booster. I know it sounds weird to say I'm killing off parasites in my body, but did you know over 80% of people have some sort of intestinal parasite? Most of those people never even know they have them because their immune systems can handle things like that. But, when you put parasites with other illnesses that weaken your immune system there is a problem. So the past week or so has been difficult. The toxin level in my body has risen due to the die off of some of the parasites. Pair that with the toxins from killing off the other diseases with the IV anitbiotic and you get someone who's very tired and weak feeling. I force myself to get up and do things some days, but some days I simply can't. I also know I push myself way too much some days, and that ends up with me in the bed for a few days. BUT, it's a signal of SO much progress that there are days when I CAN push myself. Before I may have had the desire, but not the physical ability to get up and do anything. I am improving, it's just a slow process.

I don't know if I ever mentioned this on here but I have daily fevers. I've had a fever every single day since March. Most days they go anywhere from an elevated temperature 99.5 or so up to 101 degrees. However, since my normal body temperature is low (usually 96.8) even going to 99.5 is hard. I've been seeing some improvement in the fevers lately. They haven't gone away, but they aren't going as high every day. That's a really good sign. But, if you want to know what a "good day" is for me, imagine having the flu, mono, a fever, and a stomach bug all at the same time - well, you get the idea...haha. The Lyme, Bartonella, Babesia, etc. take such a toll on me that a good day is when I feel "half-way sick" but I am improving and I am praying that soon my good days will actually be closer to what healthy people's good days feel like!

I'm working on another post but God's not done letting me know what to say. So, in the meantime, I figured I would let you know what's going on with me health wise. I'm improving, I'm still fighting, and I'm still in need of prayers to get through all of this. I appreciate each and every one of them!

"God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so tht you may be able to endure it." 1 Corinthians 10:13 (NRSV)

He has not tested me beyond my strength, He has provided relief to me, He has carried me through these things, He is faithful and will provide a way out for me. God is good all the time, all the time God is good.

Much love to you all-
K

Wednesday, September 8, 2010

Climbing up from the valley...

I haven’t written any updates lately because, and yes I realize how ridiculous this sounds, I haven’t wanted to (you guessed it) “jinx” it. When will I learn to just trust God and understand that I can’t “jinx” anything? Another reason I didn’t write about some of my big improvements is because the diseases I have are different than most in the fact that you can go from really good to extremely bad very quickly. I guess I felt like people might not understand if I wrote about feeling better then had to turn around the next week and explain that I felt bad again. I struggled with this entry more than any other I think. However, after talking with God I realized I have had so many wonderful people praying for me and they needed to know how many prayers were being answered. I also realized that the people who have continued to read this would understand if I had to come back and explain that things had gotten bad again. God made me see that if I didn’t write about my progress then He wouldn’t get the full glory He so rightly deserves and none of you would get to feel that amazing feeling that comes when you see, or read, about prayers being answered. So, to God be the glory for what He’s done for me.

In my last entry I wrote about doing laundry and accomplishing a few other tasks that made me see how much better I was getting to be able to do any of that. However, I also wrote about how frustrated I got when I realized that I wanted to do MORE and I couldn’t because my body has been in bed for almost 2 years straight. I also wrote about how hard treatment itself is on the body. I wanted to get up and do more but in all honesty, I couldn’t because I don’t have the muscles to do things anymore. My calf muscles feel, and look, like they aren’t even there. I understood that my body couldn’t do more because of what all I’ve been through.

I prayed and just talked to God about how I would get some strength back. After thinking about what all I’ve been through I realized I basically need physical rehabilitation. So guess what…I started my own rehab! I actually got on our elliptical machine downstairs and went for 3 minutes one day. Of course, I didn’t have any incline or resistance turned on but still – I was in motion for 3 minutes! Then I started to slowly increase. My husband would laugh at that last sentence because my version of slowly increasing was to go from 3 minutes to 7 minutes then to 15 minutes. I am so OCD about how I work out on that machine. I mean, the screen tells you how long you’re on, how many rotations you’ve done, how fast you’re going, how many carbs you’re burning – who wouldn’t start staring at numbers and pushing harder and making goals instead of just doing 3-5 minutes every day – haha! I have to keep my pulse oxymeter on to make sure my heart rate doesn’t go too high but that’s really the only number that will stop me! I’ve said before that we won’t know the extent of my cardiac damage for probably a year or so after treatment. My heart still has to work hard just for me to stand up since my blood pressure bottoms out when I stand up. If I stand up and stay in one position I will pass out the only question is how quickly it will happen. SO, I am watching my heart while I start this rehab process. My heart rate when I’m sitting is usually in the high 60s to low 70s but when I stand up it’s around 120. I don’t want to push it too hard so I make sure that it doesn’t go above 140 when I’m on the elliptical machine.

I am still having to deal with some emotional herxes from the IV medication. I find myself frustrated easily so I know I need to keep bringing all of this to God. Some days it’s hard though. It’s as if my mind wants to be mad at God for all I’ve had to go through, but my heart knows that He’s bringing me through all of this. He is the reason I’m getting anywhere. I have to stop thinking, “Why did I have to get so sick? Why did I have to miss out on the past 5 years of my life basically?” and I have to start praising God for all He’s doing and what I know He will continue to do for me. I am such an impatient person and I am so ready to be healthy and “get on with my life” that I have a hard time thanking God for each and every improvement. But I’m trying to praise Him more and question Him less! I think most people probably have a hard time with that! There are so many questions we have about the bad things that happen in this world that we often overlook the multitude of wonderful things God does for us on a daily basis!

I’m going to be honest and explain that just 2 months ago things were extremely bad with my health. There were a few nights that I worried I just wouldn’t wake up in the morning. I had such horrible pain and was on oxygen almost all the time. I was too weak to walk the 5 steps to my bathroom and would have to support my weight on furniture or walls to get there. It was one of the darkest times of my life. I told my husband that over the past 5 years I’ve gotten used to continuing to fall lower and lower. It seemed like I was going downhill and each time I would think I hit the bottom, well, I would fall even lower. So, for a long while I think I had fallen off the mountaintop and had found the deepest part of the valley. I walked with God there for a long time, or rather God carried me through that valley for a long time. I have always believed that you learn more from your time in the valley than you do from time on the mountaintop. When you’re on the mountaintop you don’t feel that deep need to lean on God for every single thing. But, when you’re in the valley God is the only thing you have to cling to and your dependence on Him grows daily. I would not be the person I am today if not for my times in the valley. As much as I hate to look back at all the times in my life when I was unable to do things because I was sick, well, from my current perspective I realize those were the times that God was working on me the most. His greatest work in me has come in the past 3 to 5 years as I have struggled so much but learned to lean on Him so much more.

Now, here I am with good news. Here I am walking around my house, taking showers, doing laundry, getting on the elliptical machine – can you believe how fast God has started to bring me out of the valley? But I must admit I had another thought about getting out of the valley. Falling down from the mountaintop did not take work – it just happened. However, climbing out of the valley is another story. God will be the one who gets me out of the valley but I must be active in my own rescue – I must push myself to take the next step. I must force myself to remember what it was like to have a “real life” where I could function somewhat normally. Falling down happens to you but getting up is something that requires effort. Of course I am not alone in this effort! God is with me as I climb up the side of the mountain just as much as He was when I was falling in the valley. The difference to me will be how much more I appreciate the view from the mountaintop after spending so much time in the valley.

I have another story before ending this long entry. While I was in Kansas City I had the pleasure of meeting another patient there named Sarah Young. She and her husband have been missionaries for over 20 years. I must say she radiates God’s love – it just shines right through her. And as much as I hate that we had to meet under such horrible circumstances with both of us going through IV treatment, getting to know her was a blessing. If you’re wondering why I’m using her full name it’s because she’s also an author who has written a wonderful daily devotional book called, “Jesus Calling”. She gave me the audio CD version last August after I had gone through the emergency surgery where I lost my right ovary. I was too sick to be able to read but she knew that listening to it might help me. She had been sick for a long time too and this book came out of her personal writings in her prayer journals. As years went by she started focusing more on listening to God and writing down what she thought He was trying to share with her rather than just writing down her own words. She’ll tell you that her writings are not inspired as Scripture is, but they helped her grow closer to God. I started to listen to this book again lately as I went through my morning IV treatments. As I’ve seen improvements in my body each day, the book started to take on a new meaning to me as I listen to it this time versus when I listened to it at this time last year. I didn’t realize that lately I started asking God not only, “Why me? Why do I have to go through this?” but also, “When is this going to end? Will there ever be a day when I can say I’m healthy?” So, one morning as I listened, I heard the devotional for that exact day and it hit me hard. I wanted to share it with you:

“Grow strong in your weakness. Some of My children I’ve gifted with abundant strength and stamina. Others, like you, have received the humble gift of frailty. Your fragility is not a punishment, nor does it indicate a lack of faith. On the contrary, weak ones like you must live by faith, depending on Me to get you through the day. I am developing your ability to trust Me, to lean on Me, rather than on your understanding. Your natural preference is to plan out your day, knowing what will happen when. My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness.”

She wrote that after reflecting on the following verses:

“Now listen, you who say ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’” James 4:13-15 (NIV)

“Trust in the Lord with all your heart and lean not on your own understanding.” Proverbs 3:5 (NIV)

“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:28-31 (NIV)


I used Isaiah 40:31 in my August 21st entry after being able to go without the wheelchair to my doctor’s office. I use that verse a lot. It’s one I cling to and love to read. I now have the hard copy of Sarah’s book as well and lately I either read or listen to the CDs most every day. I read it knowing that she wrote it during the time in her life when she was sick and could not find help. I read it knowing that as a missionary of 20+ years, she was hit by the same diseases that I had been hit with. I read it knowing that we will never know the answer to “Why me God?” and that our belief in God and our works here on earth do not keep us from experiencing bad things. However, our belief in God does help us get through those bad things and sometimes those bad things inspire us to do great works here on earth that can help others. Finally, I write this as I struggle to climb out of the valley and I know I must continue to lean on God as I begin my ascent. Thank you dear Lord for blessing me with so many improvements in my life!

(Side note: To those who know me personally and who want to comment on one of my entries please do not use my full name. I have left this blog open to the public so that anyone could read it whether they know me or not and that is why I use “K” when I write or “M” when I talk about my husband. I have pictures on here and I think that’s as much as I feel safe sharing. I’m sure you all understand and I truly love when I get comments! Also, if your comments have been deleted it is because my name was used so please don’t take offense.)

Much love-

K