He truly is.
Monday, September 15, 2014
So it's been a while since I stopped writing for this blog.
My life has continued on, and it has been a rough road…but I need to write this post. I need to share my story- my full story. I will not be advertising this post, so most of you will probably not even read this. I am writing it for me. For Him.
You all know that I wrote this blog for a year and a half, talking freely about what I have gone through. I stopped because I just felt it was time- but my life has gone on since then. I have gone through hell- and while I did talk freely about it, there was a lot that happened to me that I never really spoke of. I have only shared this complete story publicly twice, and I cried through it boths times. It’s an ugly story. It has no end yet. But I need to share it in it’s entirety- because what I learned is bigger than the ugliness of it.
I have been serving Jesus faithfully since I was ten years old. I faced some hardships growing up, but still managed to walk with the Lord. Jeff and I met and got married while we were at Bible college- I knew right from day one of our relationship that he was my soul mate. That he was the man I was made for. We got married pretty fast, and a year into our marriage God spoke to us in a powerful way about our family- that He wanted us to trust Him with our family. I got pregnant soon after that, and despite having two miscarriages we still managed to have 6 kids in 6 years. I worked very hard as a mother, doing my absolute best to rise to what God had given me.
But 5 years ago everything changed. I was hospitalized for a regular infection that I just happened to get a really severe case of. It took several days, but they finally were able to treat the infection and I was sent home on a particular medication. 10 days later, the allergic reaction I was having to the medication began manifesting itself. I immediately began treatment with an infectious disease specialist, where I learned I had something called Stevens-Johnson syndrome. I also learned that there was nothing they could really do to stop it- but that we had to wait it out and then assess the damage. SJS ravages the body by literally burning everything with a membrane- skin, eyes, internal organs, central nervous system…it took me 6 months to “recover” to what my new normal would be. I would never again be the person I used to be.
I had eye damage, issues with my liver, some nervous system issues, and some skin burning- but all in all, it was livable. My body hung in there and I was able to live somewhat normally for a while, although never quite the same. But 2 years ago, my body decided that it could no longer withstand the damage that this disease had done to me, and I just started to deteriorate.
My nervous system is shot- which translates to all over pain, all of the time. There is not a moment of any day that I am not in pain. I am extremely weak and need twice the amount of sleep that I did before. I have been through every test the doctor could think of, and when she ran out she sent me to a rheumatologist, followed by a year of seeing a neurologist, and now capping off with a pain management specialist. I have had cat scans, x-rays, MRIs, biopsies, and dozens of vials of blood drawn from me. I have been on so many medications that I stopped counting after the tenth one. At this point there is nothing to be done to fix me, so now the focus is on trying to give me doe quality of life by helping deal with the pain I am constantly in. To try and help with the pain, I was given pain medication- codeine, lortabs…the pain blew through those and I went to Percocet. After that I went to straight morphine and oxycodone. After that I went to fentanyl patches that I wear 24/7 to constantly be getting a supply of this potent opiate. I am currently waiting to being litocaine infusions where I will sit in the hospital every 2 weeks for 3 hours while they pump my veins with lidocaine. My body has been through so much that I just want to stop and never go through another treatment again- to just choose the pain instead of the side effects. It is not a choice a person should have to make.
Because each of the lovely medications I have been on have heavy side effects. I have lost and gained weight, lost my taste buds, had my hair fall out, lost the ability to go to the bathroom on my own, lost my ability to regulate my own body temperature, lost my ability to have normal female cycles, and at times, lost my ability to even remember my own name. One night I stopped breathing three times.
And then for each medication I have come off of I have experienced an array of withdrawal symptoms from shaking and sweating, to where I currently am at which is vomiting for the past 9 days and watching my body wretch itself inside and out.
I watched as everything I love dearest in the world got ripped away from me. I am not the person I used to be. I used to be so happy and easy to laugh- but now I am always concentrating on the pain and cannot laugh as quickly as I used to. I am no longer able to be the mother I once was to my kids. I had to stop homeschooling them and put them in a private school. Despite wanting more kids, I am unable to have any more. I don’t cook and clean and run the house like I used to. I watch other people help raise MY kids. I felt like nothing. I felt like I had no idea who I was anymore- because I am nobody now. Like everything that defined who I was got taken away.
And the man who has given up his whole world to take care of me doesn’t have the wife he used to have. Jeff quit his full time job a year ago to stay home and care for me and the kids. He gets my medication, does everything for the kids, holds my hair back when I am sick, and never fails to tell me every day how much I mean to him. But I can give so little back. He has given up everything in his own life to take care of me. Really, he has no life- my condition is his life now. I could live a thousand lifetimes and never repay my husband for being the kind of man he is.
But I did good for a very long time. For a long time I was staying positive, trusting in Jesus, and just really hanging in there. But day after day, week after week, and month after month of all of this just takes its toll. I would be lying if I said I never prayed for death. There are times where I feel like death would be a much better alternative. Jeff and I are very private people in some ways…what very few few of you know is that last fall we thought I was going to pass away. I had stopped eating, barely was able to leave the bed, and I remember the night at 3am where Jeff found me passed out on the kitchen floor and had to call the ambulance. While I was in the hospital the doctor informed me that the tests were showing that my liver was dangerously unwell. We thought we were nearing the end. I felt close to God and in all honesty, I was at peace. When you are sick for a long time, death- going home to be with the Lord is a welcome thought. Jeff and I said our goodbyes and began to get our affairs in order. But just when we were going to start telling our families, I started getting better…better enough to just barely continue on with life. Many times since then I have wondered why. I am being as honest as I possibly can with you- because if you don’t know the struggle, then you wont hear the testimony.
For a long time after that I stopped talking to God. As I watched my world get ripped away from me, I started to have feelings toward God that made me very uncomfortable- and so instead of risking these feelings coming out, I simply ignored the Lord for a very long time. But then an old friend of mine- the pastor that lead me through my teen years- told me that I needed to talk to God, no matter what was going to be said. He told me that God already knows what I am thinking- and He would rather me tell Him than ignore Him.
So I did.
One night I told God exactly how I felt about Him…I told Him just how much I hated Him. I called Him a liar. I called Him evil. I wasn’t angry that I was sick- I accept that bad things happen in this world. What I could not understand was how God would lead me to have all these kids, KNOWING that I would have to watch it all fall away from me. It felt sadistic. It felt like I followed God and He lead me to an impossible, painful, tortuous situation. I felt like God was a deceiver…and I told Him that.
I have been through many hard things in my life. Some you know, some you do not. But it had never challenged my faith before. But there is nothing like constant, constant pain. Nothing like wanting to be who you are but instead being a prisoner in your own body.
I actually started to think about the apostle Peter one night. Peter went from having faith and declaring that Jesus was the Christ- to denying Him THREE times. I wanted to know what could have possibly happened between walking with Jesus for 3 years and declaring Him to be the Messiah, to denying he even knew him. I needed to know the answer to that. For those of you who ever go through hard times, you need to understand this answer too. And I really think I understand what happened to Peter. I think Peter followed Jesus and knew who He was because of the hope he had in his heart. I think He knew what the Old Testament said the Messiah was supposed to be and all the things this Messiah would do…and he believed with his whole heart in this Messiah. These people were waiting in a Messiah that was going to set them free- free from their oppressors. They believed He was going to wage war against the enemies of Israel and then reign as their King. Peter was waiting for this But Jesus did not do one single thing that Peter and the others thought their Messiah was going to come and do. Jesus didn’t do anything great or heroic- instead, he was dragged to a courtroom and tortured and the only thing He had ever done with his life was travel and talk to people for a few years. There was no war. There was no freedom from their Roman oppression. Truth be told I think Peter denied Jesus because He felt betrayed or maybe just very confused with Jesus. Jesus didn’t do ANYTHING they thought He came to do. Instead, He just died.
Because that’s how I felt toward God. I served Him with an unwavering faith for many, many years because I knew what the Bible said God was. God is a healer. God is a provider. God is good. I knew all yet…but yet in my darkest hours I didn’t see ANY of that play out. I was sick and did not get healed. I had financial hardships and there were many bills that could not be paid. I live in constant pain and He has not stepped in. I needed a healer- a provider- a good God. And I never saw that.
So I- like Peter- had a time of confusion. I thought who He was hinged on His performance in my life. So when He did not act, I felt betrayed. But here’s the thing: Peter went from denying Jesus to boldly preaching to thousands to becoming the leader of the first church and eventually a martyr. What happened between Jesus’ death and Peter’s newfound faith?? WHY PETER?…What the heck happened to make you regain your faith? To have an even STRONGER faith?? Did Jesus suddenly fulfill and become everything you thought He should be??
The only thing that happened…the only thing that Jesus did…the thing that changed everything for Peter…was that He came back. He left the world, but He came back. That’s it.
When I told God how much I hated Him, and I railed on and on at Him after not speaking to him for months and months…something happened. I felt His presence. It was as if He was right there next to me. He did not heal me, did not pay my bills, did not take the pain…but He was there. And just like that, He was my God again. Just. Like. That.
My faith got torn down…and I still don’t have many answers but I know that I know that I know that HE IS EVERYTHING HE SAYS HE IS. I am sick AND he is a Healer. I am poor AND He is a provider. I am hurt AND He is good. You see, Christianity is so much more than going to church. It is so much more than praying, or talking to people about Jesus, or just living your life for Him. IT IS ABOUT KNOWING HIM. Weekly, daily, hourly, every second of the day KNOWING Him. The whole essence of the Bible is not to read about what God has done- it is to reveal the essence of WHO HE IS. You can read about all that He has done but you will never be able to comprehend His actions- they are there to reveal who He is. He did not part the Red Sea to show His power- He did it to reveal His character.
I am so, so grateful for all I have been through. Because it took me to depths I never knew I was missing- it allowed me to know my God deeper than I ever could have known, and it gave me my real identity, one that cannot be taken away…and I needed to testify to that. It took my faith, ground it to pieces, and then put it back together in a way that can never be touched- because it hinges simply on who He is. Period.
Maybe you're having a hard time- or maybe you're not. But if you don't know who He is- if you don't daily discover the depths of His love and goodness, then this world will be able to knock you down. You need to understand that God isn't worthy because of His actions in our lives- because you might not see Him act the way you think He should. He is worthy just because HE IS.
And He is everything the Word says He is. He is good. He is good, He is good, He is good.