Daddy knows best.

NOVEMBER 10, 2011 - THIRTY THREE DAYS POST OP

Today I woke up with all the signs of a UTI, but I waited to call Beverly (one of Dr. Bird's secretaries) until later in the morning than I should have, I believe. Today is a surgery day for Dr. Bird so I should have called as early as possible since getting ahold of him is more difficult than non-surgery days. But I kept trying to ignore it and put it off because tomorrow is dad’s birthday and I really don’t want all of this to get in the way of that. Dad has sacrificed so much for Mom and all of us, and I just want to give back to him and spend the day focusing on JUST him and giving him honor. But right now at 11:30 pm we’re waiting on the on-call resident to call us back and give his opinion because it’s just killing me. And now I really regret not calling earlier because really, what is he going to do but call us into the ER to be seen? I’m trying to push down the guilt that rises with the lump in my throat every so often, but it’s hard not to feel that way. My parents tell me it’s their job as parents to do these things and it’s not at all a burden to them as I will understand when I have kids. I guess it’s just hard to understand right now. Well the doctor on-call just called back said I’m most likely having bladder spams. I haven’t taken Oxybutinin (my anti-spasm med) for a couple days so that is likely. I took one now and we’ll see how it works. I was sincerely hoping Dr. Bird would call back and fit me into the office to get the foley out today. Oh well. It’s surprising he never called back, actually. He’s usually pretty good about that. He generally calls within ten or fifteen minutes with an answer. Well, I feel a little relieved the doctor on-call didn’t call us in right now. I would have felt awful. The sharp pain has kind of subsided while I’m sitting here which is a first all day. Hoping and praying for total relief. As always, I will praise the name of the Lord.

JANUARY 17, 2014 - FOUR DAYS PRE OP

So my appointment is scheduled for the upcoming Wednesday. Rebecca (Dr. Bird's PA) tells me that they plan on using Gadolinium based contrast to image the cyst/diverticulum, so I'm hopeful that there will be no adverse reaction to it. I'm still taking 50mg of Benedryl every day leading up to it just in case. 

Thursday night, I had somewhat of a mental breakdown. I was just through with life. I feel that I've reached the edge of my sanity a lot faster than I thought I would. Work hasn't slowed down one bit and it's a serious battle to get through one day. I feel bad, like I'm gonna leave the lab in a lurch, but I don't want to put surgery on hold any longer. It's not my fault that this has happened to me. All this scheduling has been done by the doctors based on when they can fit me in and when they think is best for my health. But they don't know what it's like to hurt, to have something in you that doesn't belong and then to constantly subject yourself to a physically and mentally demanding environment for 10-12 hours a day. And then I think I'm just tired. I don't want to go out where theres a bunch of people constantly asking what's wrong and what I'm having done and "in Jesus name, I rebuke that thing" and "you're not meant to go through this so young" and "I'll pray for a cyst and not a diverticulum" and "you're not going to have surgery in Jesus name". As if they know. And as if I should pray for one particular disease over another. And as if God couldn't possibly be working a process though all of this. I can't stand telling the same story over and over and somehow keeping my mouth tied with a smile while they say all that. I know they probably mean well and probably think they're being encouraging. Or maybe they don't know what to say. Clearly they don't know the RIGHT thing to say, which is actually nothing at all. But it's just completely miserable to me to have to endure someone who has no investment in my life grab me and begin to declare "God's will" in my life. They have no idea, and that actually does more damage to me than healing. But I lost it all on Dad the other night. I couldn't stand any more of it. And it broke my heart to see him upset because I was being terrible to him. But still he came out into the office and sat with me. He knew it was more than me just being mad, it was me falling apart. We talked for a long time about what we believe for and what we don't know what to believe for, how I need to have grace for people even though their responses only remind me of what I don't want to think about, and what God's will for me really is. I know He cares for me and I know he doesn't want me in pain. Dad talked about supernatural healing, which I know is one of his heart's deepest desires. Then he laid hands on me and prayed, with tears in his eyes, for my healing. This is heaven, I thought. This is what it's about. He's praying because he loves me. And while I'm still having to deal with pain today and I still have the procedure to go through on Wednesday, that moment meant more to me than probably any other moment of prayer in my life. He healed my heart. And I know he's gonna keep praying until I'm healed. Not forcefully, not to backhandedly suggest that I live in unbelief, but because he loves me. I only pray that God will help me with my attitude. Reading some of these old entries, I discovered I had such a good outlook and a good attitude, especially compared to now. I have been mean and terribly petulant. I pray for forgiveness and HELP. Please.

Something old, something new...

So I think the way I'm going to do this is to post an old entry and a new one each time (that is, until I run out of old ones). I think it will be interesting to see the comparison. So here you go. The first entries of starting this experience two years ago and restarting it now.

NOVEMBER 7, 2011 - ONE MONTH POST OP

This weekend I had to go back into the hospital and have my nephrostomy tube put back in after I accidentally pulled it out on Wednesday night. The first several minutes of the procedure were actually kind of fun since I was able to observe most of what the interventional radiology doctors and technologists were doing. But around twenty minutes in, something happened that made my diaphragm and stomach hurt like crazy. It felt on fire and I was having terrible trouble breathing. I was given more Versed and fell asleep after that. Luckily I don’t remember the rest. I stayed overnight and came home yesterday. Today I am still VERY sore, but I am managing. Wesla came over to ask questions about the procedure and about the condition in general because she’s using me as her study in nursing school. It was fun talking to her, she always livens up a day. 

I’ve been fighting feeling down, especially in the evenings when I lay in bed without family constantly around me. It’s hard to ignore what you’re going through when there’s no one to distract you. But I will lay in bed and pray tonight. I’m mostly too tired to care about pain right now, but God is always worthy of praise no matter how tired I am. This week’s scripture has been Romans 8. 

Bless the name of the Lord.

JANUARY 15, 2014 - TWO YEARS POST OP... ___ DAYS PRE OP?

It has been roughly two years since my last surgery and the little kidney is at it again. I’ve been in nonstop pain for several months. The emergency room CT and follow up MRI showed only a residual “cyst” left over from my previous surgery. It is small and doesn’t look like it’s grown at all since two years ago. So I had a HIDA scan to look at the output of my gallbladder which was mildly abnormal. However, the pain I’ve had the last several months is so similar to the pain I had before surgery the first time, so I was also ordered a renal scan of the same type. It looks at functionality of the kidney, not just construction. It was the worst thing I’ve experienced since those old days in the hospital. I make a point out of not crying out of pain in front of people, but I just couldn’t help it. It hurt so badly. I had to lay on a table much like the one we use in the cath lab, but with much less padding. Ten minutes after they give me a radioactive tracer, I was given a bolus of Lasix. For the next hour, pictures were taken to trace the fluid through my kidneys and bladder. I’ve never had to pee so badly in my life! And the pain was unbelievable. I kept counting up as high as I could by 3’s and then down in 2’s just to get my mind off of it. Finally, after an hour, they let me off the table and I rushed to the bathroom. I sat in there and cried. Part of me couldn’t understand why. What was wrong with me? I needed to get a hold of myself. But the other parts of me instantly answered. I had forgotten what it was like to be tortured for a diagnosis. The staff, the doctors, they all mean well and are very good at what they do. But to my body, it was torture and the sudden flood of inflicted pain was demanding of a response. My eyes were red and swollen when I made it back into the room. Mom started crying when she saw me and the nuclear medicine technician tried to cheer me up by talking about my life outside of my condition. She didn’t mention that I had cried, not once. I liked her. I scheduled gallbladder surgery hinging on the results of my renal scan. The waiting is what’s the worst. Actually no, the questions while I’m waiting are the worst. Everyone asks the same questions over and over and I have to relive the things I don’t want to think about over and over. I know everyone is concerned and I am extremely blessed to have people in my life who care about me. But it gets difficult when the first thing people ask is how my body is doing and not how I’m doing. I’m more than a misbehaving kidney, you know. I have dreams and a destiny. I have things I’m meant to do and this isn’t the end of them.

But two days ago I finally got the results. My renal output on the right side showed the tracer getting caught up in the old area of the diverticulum. Dr. Bird isn’t sure if it’s just hanging up around old scar tissue or if it’s getting caught in the residual “cyst”. So today he is having a conference with the Shands interventional radiology team to discuss how they will be working on me. They will plan to draw fluids from the “cyst” to see it it’s filled with serous fluid or urine. Then they will inject dye into it to see if it’s a simple cyst or a diverticulum that’s connected to the rest of my urinary system. If it’s a cyst, then the team should be able to ablate it right then and there. If it’s a diverticulum again, then Dr. Bird says he’s have to take out that entire lobe of the kidney or else it will keep forming them. He said the surgery will be more extensive than the last time. It is risky too. Taking out a lobe has to be done very carefully. If the vascularization of the kidney is compromised, the entire thing will be lost. 

I have two fears, one of which is inevitable. The first is that it is only a cyst and that ablating it doesn’t help my pain or that it will but I have to get it drained every time it fills. At least that will be only every few years. The second is that it IS a diverticulum and I have to go through the nightmare of two years ago all over again. But I do see a bright side. If the latter, more terrible sounding idea is what happens, I will have SO much time to rest. God has blessed me with my job at NFRMC and it has been wonderfully educational. Also with the money I’ve made, I’ve been able to buy a car and save up enough to pay rent on a house for quite some time (or pay medical bills, as the case may be). But the stress of the cath lab is evident in everyone who works there. It will be nice to have a rest, a real rest. And quite possibly, by the time I get back, some of the stressful politics will have resolved too. This whole thing would be less challenging if I were at home instead of work, but I guess a less challenging life is a boring life and makes for a boring person. Ha ha. I’m going to be the most interesting woman they’ve ever seen. Satan has awakened my muchness, and he WILL hear me pray. Watch out world, you WILL hear me bless the name of the Lord.

March 28, 2014 - Let's start in the very middle... it's a very good place to start...

So... yeah... a blog! I have no idea what I'm doing and I only half know why. This has been a long time in coming and I admit that I'm a procrastinator, but there's no time like the present I suppose. For that reason, we're starting kinda in the middle of the story I'm trying to get down, although I've been writing it for a while without sharing it. So I'll give you a brief history. As many of you know (and many more of you probably don't), four years ago we discovered I was born with a rare condition called renal diverticulitis. Much like the more common intestinal diverticulitis where the intestines are riddled with sac-like aneurysms, my right kidney forms pockets that balloon out and fill with fluid, creating a breeding ground for kidney stones and infections and causing intense pain. And if you want to pick an embarrassing condition, having a problem with the urinary system is a great one... believe me. I was in cardiovascular school in an echo night lab being scanned by my lab partner when she saw a huge black spot right under my liver. At first it was labeled as a simple kidney cyst and I was told if I'm not symptomatic then I shouldn't worry about it. Six months later, I was in the worst pain of my life and couldn't even stand up long enough to walk from one end of a small room to the other, much less scrub into procedures at work while wearing a 20 lb x-ray protection suit. It was interfering with life... and I wasn't okay with that. Turns out the "cyst" had grown two centimeters in that short time, which in the world of medicine is pretty significant. It was taking up half of my right kidney. The problem with me was that while %2-4 of people have renal diverticulitis, the placement of my aneurysm, or "diverticulum", was very difficult and never really seen before. Instead of forming on the top free wall of my kidney as is common, mine was down in the core of my kidney's calyces making it extremely difficult to visualize on any kind of imaging. God connected me with an amazing urologist, Dr. Vincent Bird at UF and Shands who performed the common cure surgery for this type of condition on me. That was two years ago this past September. I was in and out of the hospital countless times and had a JP drain, a nephrostomy tube, and a foley catheter for nearly three months. Remember what I said about embarrassing? Yeah... my best friends and family were emptying my drains, bathing me, and dressing me. I've peed in a cup more times than I can count and have been exposed to people I don't know more than anyone ever should have to be. I've taken more narcotics than any 23 year-old should know exist and I have experienced losing my mind... literally. But God brought me out. And even as I laid in that hospital bed, unsure of the difference between reality and hallucination, there was one thing I always felt like a distant dream echoing from the deepest corners of my mind: God is good. Somewhere in me, I knew He was still there and slowly I watched Him bring me out of the desert into a paradise. I still shiver when I think about the pain I went through, but I don't blame God for anything. He saw my ugliness - all that dirt and grime - and out of furious mercy, He planted a garden in it. There are things in place in my life right now that would never have been if not for that. God didn't cause the tears, but He did fill his pen with them and write something beautiful. During that time, my grandmother had given me the small journal you see in this background picture to chronicle my healing. Doing that, I learned that healing is not linear. Some days you feel great and the next day you feel like complete trash. But over time, you see yourself heading upwards. I would go back and read old entries and discover that I was doing things I couldn't do a few weeks earlier. It was very helpful in letting me see how every day was one step closer to being better. Eventually I stopped writing all together, because I thought I had no need for it. But it seems that now, two years later... the pen is filling again. Not to say that GOD doesn't write every day even when I don't, but for some reason blood, sweat, and tears make for unmistakably stunning ink. The common surgery wasn't a complete success due to the very unusual nature of my particular condition. I am looking at a partial nephrectomy (removing half of my right kidney) in June. Facing this again has sent me to writing and seeking encouragement in those old entries once more. If you have any kind of kidney disease, or if you're going through a struggle, or even if you aren't either of those but you are just curious about what I've been through, I've decided that I will put all these entries up for you in the hopes that they may help you while you chase whatever healing you are chasing. And if you aren't chasing, then maybe you should start. These are for you. These are the songs I write by a closed window when it's raining, the words I jot down in my phone or type up on my desktop at work so I don't forget them, my sighs and head shakes, my quiet brooding. This is what's going on in my head. Unfiltered. I refuse to let myself edit this stuff to make it "Facebook worthy". This is everything I write when I think no one but God is listening. Maybe to someone, the frustrated, contemplative, unsure, tired, mundane, and consequently miraculously inspired me will speak louder than the strong, smiling, confident, busy, and consequently grossly misunderstood me. Here you go. Do with them what you will.