~Experimenting~

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~One Year with steroids!~ :)

     
Ever begged God to let you do something or to intervene in some way, then after a few months forget about it? I couldn't start without saying that it may seem like this last year has been a horrible tragedy to some, but for me it's an answer to my prayers. Yes, I am probably crazy! :) 
You see this didn't start with swollen ankles or just because I was completely stressed out or sick with the Noro Virus that previous winter. No, this started because one night, while sobbing to the Lord over my hard heart, how far my family was from Him, and some other things, I prayed that He would somehow use me; and if it took a trial for me and my family to go through, I wanted it. Some would probably say I am crazy for praying like that, but I wanted to grow in Him and be closer to Him than ever before, and I wanted to be used of Him more than anything! When I prayed that, I didn't know how HE would answer me. I didn't have a physical illness in mind or anything dealing with medical things. But HE knows best how to get ahold of our hearts, and His way is perfect. I can't say exactly how this has affected my family both near and far, but I know it has.
   Let me start 3 months previous to when I first got sick. My Grandma had been in the hospital because of a blockage in her colon, and had been throwing up bile. My dad & I went back to visit her; my dad was happy because he knew she would be okay. But the Lord was warning me in His own way that this would be the last time I would be able to see her. As I walked into that hospital, I felt a literal burden on my shoulders that made me sick to my stomach. Of course I didn't say anything to anyone because it would sound absurd to them, since now because they had done surgery, she was fine. But I knew differently. I hugged her extra tight and close that week. The following April, while I was sick, she passed away, and I wasn't able to go to the funeral. That was when I told my mom about what I had known the previous November. We cried and prayed together over it all. It's bittersweet for me to think about it now.. I'm so thankful that the Lord prepared me for it knowing that I would regret it if I didn't get to say goodbye to her as I had wanted, but also knowing I would not be at her funeral. I did get to say goodbye, and I have no regrets, although I still miss her from time to time. 

 A year ago today,  I had swollen ankles, but we didn't much worry about it until 2 weeks later when it wasn't getting better. We went to the urgent care late one Friday night, and from there we were sent to the ER for a possible blood clot. After being examined at the ER, they decided they wanted to do an IVP dye test on me. We had been praying all night for the Lord to show us His hand in this and show us what we should do. We refused the IVP dye test because my mom is severely allergic to it, and we figured now was not the time to find out if I was too! They then wanted to run a more extensive test on me which they were going to have to call in a specialist for. We decided since I had none of the risk factors and the ultrasound they had done earlier revealed no blood clots that this was the Lord's way of telling us that it was time to go. Six days later, I saw my family doctor who discovered that my kidneys were stripping protein from my cells. The kidneys are supposed to re-filter protein back into your blood stream, but mine weren't. So to figure out why my kidneys were doing that, they told me I needed to have a kidney biopsy done. Around this same time I was supposed to be going to FL to look at a college to go to. My friend Delilah was going with me to also check out the college. My Grandma also had had a stroke and passed away, so my dad & sister went to IL for the funeral. I was not fit to travel though, so stayed behind with my mom. So the same weekend that I was to go to FL, I ended up having a kidney biopsy instead, which showed that I had Minimal Change Disease. 

me & Delilah

    Six days later, I had another appt with my regular dr, and I was having severe pain on my right side where they had done the biopsy, I could hardly lift my right leg. But after the biopsy, I hadn't had any pain at all, it was just a "coincidence" that I had this pain on the same day that I had my appt with my regular dr. Because he hadn't seen me yet, they didn't want me to take anything for the pain, and I had only eaten a tiny thing of yogurt for breakfast. After checking me out, and seeing that nothing else was wrong, he sent me to the hospital to do an ultrasound to make sure there wasn't any internal bleeding from the biopsy. When we got to the hospital, they had me fill out more paper work. While sitting there, I got a fever and chills, and a severe headache, but I was still not allowed to take anything. I could hear the nurses behind the desk saying they couldn't find the doctor's order, and searching everywhere. Needless to say, I did not have much hope at that moment that I was in good care. The nurse at the desk though, Ceicil, was really nice, and I liked her from the start. Because I was shivering from the chills, she came and tucked me in a warm blanket. One of the nurses came out from behind the desk and said ok, we're going to do a IVP dye test, I said oh no! You can't do that.. and she's like why? I said because I'm allergic to it. Then she was like oh.. as if the thought hadn't even crossed her mind. Then she promptly decides that they were going to do a CAT scan, and wanted me to drink a dye that was like 90% salt, and a gross hint of lemonade(not exaggerating here! lol)... they're making me drink this on an empty stomach and with a fever, chills and headache... Not a good combo! At first I refused, and she said, but we can't find the doctor's orders, I said ok then you keep looking, or call him... or better yet, I'll call him. I have his cell number, but you're not gonna just make up a test to do on me. Eventually we agreed to do a CAT scan. While waiting, my mom went out to the front desk to ask a nurse if I could take some tylenol, and ended up talking to Ceicil for a couple of minutes. Ceicil had asked what religion we were because she noticed we were wearing skirts and saw how my mom and I acted toward each other. Mom told her we were Baptist, and she said oh I thought so, but you could tell that she was pleased. As soon as we had finished with the CAT scan, I had no more pain, and was told there wasn't any internal bleeding, so I was sent home.
    So we kind of got to witness to her, and other than that we can see no other reason for going there, for after we talked to her, my pain was gone, and I never had it again. Maybe the Lord just wanted us there to talk to her. I don't know, but I hope that His purpose was fulfilled through us.

Now having a diagnosis, I was sent to a kidney specialist. From what I was told, I wasn't supposed to be able to get in to see him; but as soon as he was told of my condition and my age, I was put at the top of the list. I was put on steroids and told that it would probably take about 4-5 months for my body to react to them because little babies usually take about 2 weeks minimum to respond to them. In 10 days, the protein was gone and my kidneys were healing. Looking back on it now, I see God's hand in getting me in and treated so quickly.
   
At his time, my Grandpa was getting worse in his sickness, and I was allowed to travel, so we went to Illinois to visit him, and I was able to say goodbye to him for the final time. My Grandpa died (9 weeks after my Grandma), and we headed back east again to go to his funeral, which I was allowed to attend. I was able to get off the steroids while we were there, and 2 weeks later, the day we returned home, I noticed my ankles were slightly puffy again. We knew there was an 80% chance of a relapse, so I wasn't entirely surprised at this. After confirming that the protein was back, I was put back on steroids and have been on them since July.

   Because of the steroids, I had many side effects, which was just about everything from headaches, nightmares, to waking up not knowing if I would be able to stand, let alone walk, and no control over my body (literally, I had no control over my emotions or anything, and I didn't have any reflexes at all! I ran over my own foot with the vacuum, and hit my head in 1 spot 3 different times in one day). I think the only side effect I didn't have was seizures. Praise the Lord for that one!! Because of being on the steroids for so long, I also got Cushings syndrome, and as a result of that, I now have Addison's disease, which means my adrenal glands do not function as they're supposed to, which means NO ENERGY. I have started seeing a Naturopath as well now and I am now taking some plant based medications to try to get my adrenal glands to work normally again.

me & my brother, Amos

me & my parents

    And through all of this, I have still been going to the dentist every 3 weeks because of my braces. They were supposed to be done by the end of the summer, but they weren't. So my orthodontist has been getting regular updates from me and my mom on all of this. She really does care about me, and I like her a lot. But one day, I went back to her for my 3 week appt., she almost started crying when we told her about the Cortizol Stimulation test I had the day before (it didn't go so well. Took them over an hour just to find a vein to draw blood from), and having known about everything else I had gone through from the beginning, she just gave me a big hug and said, "I can't tell you how proud of you I am. You never give up hope, and you don't quit." I told her, there have been many days that I have wanted to break down, and say what's the point?! But I didn't because I knew it was no use, and it doesn't help anything. The Lord has been my rock and my strength through all of this, and because of it, I ended up staying home at least another year. Some people tell me how sorry they are for me because I didn't get to go to college, but I'm not sorry. Just because I'm sick, I'm not sitting at home doing nothing. In fact, for not having a full-time job, I am very busy! You see, when I started to heal again, the Lord already had a plan for me. One of our pianists at church decided to take a break from things, and I started filling in. I was thrilled and terrified at the same time. About a year ago, when I quit piano lessons it was mostly because I thought I would be going to college, but piano was also more of a chore for me than a fun thing anymore. My passion for it had left somewhere along the line..maybe because I was too stressed with everything else that was also going on. But He gave me my passion for music back and, I now play piano for church at least 3 out of 4 Sundays in a month. I play for special music, as well as for our ladies group, and because of it, we've been able to do some new songs, and the Lord has really blessed. I also still wanted to take Bible classes, and our church just started taking college courses from another church in Louisiana... we do them by DVD. It's Old Testament, New Testament, and Theology in 1 course, once a week. So I get 3 classes in 1 and it's on Monday nights. So it fits perfectly with my schedule, and it was only $150 for the year. I told the Lord I wanted to do this, and I also wanted to pay for it by myself.. I felt bad that I am 19 yrs old and don't have a job, and my parents have paid for everything, especially the medical bills (my kidney biopsy alone was $10,000). So the Lord provided me with some photography shoots on the side that I was paid for, and I was able to pay for my college courses on my own.


Also, I had asked my piano teacher if I could come to her annual Christmas recital because I missed her and wanted to hear how her other students were doing. She was excited to have me come, but on Wednesday night, asked me if I would be willing to be a guest pianist, and play a couple of things. I said sure. She knew I had been playing regularly at church. So I played what Child Is this and then my mom & I sang Mary Did you know. It was a blast!!! I loved every minute of it, and I love being with my piano teacher's family.

So don't feel sorry for me.. because of my prayer, and God's answer, I am now able to do the 3 things I love most: playing piano regularly, singing(music), teaching little kids on Wednesday nights, nursery, and photography on the side. I also have been able to witness to all my doctors and nurses, even the pharmacist at Sams! I love my life and I'm happy with where I am at. I honestly believe I have gotten more training through this than I would've at college, and I'm closer to Him than ever before. I've learned sooo many different lessons through this. It would take me forever to tell you all of the things the Lord has done over the last year. The Lord knew what I needed and how to provide it to me. He has proven Himself faithful over and over again. I told you all of that because the Lord says to declare His works to everyone, and He has worked in me, and I hope that He will continue to. 
I'm so thankful for friends and family and especially for church family and other churches who have been praying for me!!! I hope that you are blessed by this somehow. Thank you!!

  " Lord help me to glorify Thee; I am poor, help me to glorify Thee by contentment; I am sick, help me to give Thee honor by patience; I have talents, help me to extol Thee by spending them for Thee; I have time, Lord, help me to redeem it, that I may serve Thee; I have a heart to feel, Lord, let that heart feel no love but Thine, and glow with no flame but affection for Thee; I have a head to think, Lord, help me to think of Thee and for Thee; Thou hast put me in this world for something, Lord, show me what that is, and help me to work out my life-purpose: I cannot do much, but as the widow put in her two mites, which were all her living, so, Lord, I cast my time and eternity too into Thy treasury; I am all Thine; take me, and enable me to glorify Thee now, in all that I say, in all that I do, and with all that I have." ~ Charles Spurgeon