A little dose of reality...
Over the last week, I've been thinking a lot about choices. Every day, we are bombarded with a million mundane choices, from which parking spot to take to which salad dressing to use. Even simple things, like standing in the bread aisle at the grocery store, can sometimes make my heart palpitate. I occasionally become so overwhelmed with choices that even simple little decisions start feeling like major decisions that require a pro/con list - "this bread has 1 more gram of fiber per serving, but it's not on sale, hmm..." I feel like we often get stuck in this endless loop where we're constantly having to make a million tiny little decisions. Then, we get to a point where some big, tough decisions have to be made, and it's like we ran out of decision cards. Sometimes - when the stakes are high and the end result really DOES matter - I'm feel like I'm left standing there with an empty palm, not knowing what to do or where to turn. In the end, I feel powerless, inept, and weak. That's how I've been feeling the last few days. Up until this point, I've really been in a very positive frame of mind. Sure, there are days when I get overwhelmed and have a good "big ugly cry", and I think that it's important to allow myself that time. But I don't know if the gravity of my situation has really hit home yet. I think it finally started to sink in a couple of days ago.
Right before Spring Break, I had gotten some good news.... my creatinine levels seemed to be stabilizing and things were looking good. Then, just a few days later, my kidney function took another nose-dive. It just shows how fast this disease can progress and how quickly things can change. Within two weeks, my kidney function had fallen from about 17-20% to about 14-15%. Knowing that dialysis would start if it fell below 10%, I started getting really nervous.
Perhaps it's the high doses of steroids, which make me irritable, depressed, and anxious. Or perhaps it's the fact that my ears are stuffy and have been blocked for about five days, so I feel like I'm constantly talking in a bucket. Or maybe it's the allergic rash to one of the nine medications that I'm on that keeps itching and lingering on my chest, back, and face. Maybe the new pains in my lower back, where my poor kidneys are asking for help? Could it be the swelling from the prednisone? The feeling like I'm suffocating on my own swollen cheeks every morning? Most likely, it's a combination of all of those factors, but the last few days have been a bit rough. I've been struggling to keep my chin up and stay encouraged.
Yesterday afternoon, I had some quiet time to think after reviewing my most recent lab work. My creatinine levels are at 3.8, and my doctors had mentioned that we would need to start discussing dialysis preparations and surgical installation of a fistula if/when my creatinine levels went over 4.0. I realized that I had to change my outlook.
I have no control in this situation, which I know is the key component that is causing me such anger and frustration right now. No matter what I do, I can't stop or change this disease. It's something that is happening TO me... There are only 2 things I can control - diet and exercise. My doctor had told me on Monday that he was extremely impressed that I've been able to manage my weight and blood sugar (I'm not diabetic, but steroids can cause diabetes to start), despite my 80 mg. daily doses of prednisone. I've lost 10 pounds in the last 2 months, which is great considering how steroids affect the body. However, it's not enough. I need to lose at least another 80-100 pounds to be the best possible candidate for a transplant. Before this point, my main focus was on avoiding dialysis.... and avoiding transplant. I realized yesterday that I can't think that way anymore. I have to prepare for the worst and hope for the best. That means I need to plan and prepare for transplant. So... here we go. My primary concern at this point is weight loss. I must get my body in a position to where I can receive a new kidney if I need one.
In the meantime, if I have to start dialysis, I will. I'll follow the orders precisely and do whatever I have to do to keep fighting and keep living. I also realize that I'm lucky in a lot of ways. 1. There's something to help me while I prepare for transplant - dialysis isn't perfect, and it doesn't work as well as natural kidneys, but it does work. And it can keep me alive. 2. If I'm going to have to lose an organ, a kidney is probably a decent bet. After all, they have a high transplant success rate, you only really need 1, and you can get one from a living donor.
This disease is scary... and I'd be delusional to sit here and say that I don't feel weak or frightened at times, or that I don't have myself a good solid cry or get angry from time to time. But I'm getting some wind in my sails again. The clouds are starting to part, and I'm finding a new "project". This is about SOOOO much more than looking good in a swimsuit or fitting into a cute pair of jeans. Growing up, I always struggled with my weight. I remember my Weight Watchers mantra from 3rd grade - "nothing tastes as good as being thin feels". I'd like to amend that mantra officially now... "Nothing tastes as good as life." And that's what this has come down to. With all the challenges of medications and side-effects and anemia, I know the road will be difficult, and the odds are stacked against me. Most people GAIN 80-100 pounds on these levels of steroids, and here I am trying to LOSE that much. But I have to do everything I can. I refuse to go down without a fight. Life is just too good to give up that easily. I'm not feeling powerless anymore. Instead, I've made my decision, I've made my choice, and I'm ready to stand by it and live it.
Right before Spring Break, I had gotten some good news.... my creatinine levels seemed to be stabilizing and things were looking good. Then, just a few days later, my kidney function took another nose-dive. It just shows how fast this disease can progress and how quickly things can change. Within two weeks, my kidney function had fallen from about 17-20% to about 14-15%. Knowing that dialysis would start if it fell below 10%, I started getting really nervous.
Perhaps it's the high doses of steroids, which make me irritable, depressed, and anxious. Or perhaps it's the fact that my ears are stuffy and have been blocked for about five days, so I feel like I'm constantly talking in a bucket. Or maybe it's the allergic rash to one of the nine medications that I'm on that keeps itching and lingering on my chest, back, and face. Maybe the new pains in my lower back, where my poor kidneys are asking for help? Could it be the swelling from the prednisone? The feeling like I'm suffocating on my own swollen cheeks every morning? Most likely, it's a combination of all of those factors, but the last few days have been a bit rough. I've been struggling to keep my chin up and stay encouraged.
Yesterday afternoon, I had some quiet time to think after reviewing my most recent lab work. My creatinine levels are at 3.8, and my doctors had mentioned that we would need to start discussing dialysis preparations and surgical installation of a fistula if/when my creatinine levels went over 4.0. I realized that I had to change my outlook.
I have no control in this situation, which I know is the key component that is causing me such anger and frustration right now. No matter what I do, I can't stop or change this disease. It's something that is happening TO me... There are only 2 things I can control - diet and exercise. My doctor had told me on Monday that he was extremely impressed that I've been able to manage my weight and blood sugar (I'm not diabetic, but steroids can cause diabetes to start), despite my 80 mg. daily doses of prednisone. I've lost 10 pounds in the last 2 months, which is great considering how steroids affect the body. However, it's not enough. I need to lose at least another 80-100 pounds to be the best possible candidate for a transplant. Before this point, my main focus was on avoiding dialysis.... and avoiding transplant. I realized yesterday that I can't think that way anymore. I have to prepare for the worst and hope for the best. That means I need to plan and prepare for transplant. So... here we go. My primary concern at this point is weight loss. I must get my body in a position to where I can receive a new kidney if I need one.
In the meantime, if I have to start dialysis, I will. I'll follow the orders precisely and do whatever I have to do to keep fighting and keep living. I also realize that I'm lucky in a lot of ways. 1. There's something to help me while I prepare for transplant - dialysis isn't perfect, and it doesn't work as well as natural kidneys, but it does work. And it can keep me alive. 2. If I'm going to have to lose an organ, a kidney is probably a decent bet. After all, they have a high transplant success rate, you only really need 1, and you can get one from a living donor.
This disease is scary... and I'd be delusional to sit here and say that I don't feel weak or frightened at times, or that I don't have myself a good solid cry or get angry from time to time. But I'm getting some wind in my sails again. The clouds are starting to part, and I'm finding a new "project". This is about SOOOO much more than looking good in a swimsuit or fitting into a cute pair of jeans. Growing up, I always struggled with my weight. I remember my Weight Watchers mantra from 3rd grade - "nothing tastes as good as being thin feels". I'd like to amend that mantra officially now... "Nothing tastes as good as life." And that's what this has come down to. With all the challenges of medications and side-effects and anemia, I know the road will be difficult, and the odds are stacked against me. Most people GAIN 80-100 pounds on these levels of steroids, and here I am trying to LOSE that much. But I have to do everything I can. I refuse to go down without a fight. Life is just too good to give up that easily. I'm not feeling powerless anymore. Instead, I've made my decision, I've made my choice, and I'm ready to stand by it and live it.
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