Someone to actually visit me and not make me feel guilty for living far away
Someone to call or text to say hi, even though sometimes the Prednisone makes me not want to talk to people because I know I’ll say terrible things because I don’t really have a filter when I’m tired.
Someone who, instead of saying, “I’ll come soon,” gives several options of when they can visit and doesn’t give up when I’m indecisive. One of the side effects of prednisone is that I’m anxious most if not all of the time, and for me that translates into not being able to make decisions. I don’t care if you schedule to come see me in 2 weeks, just tell me that you’re coming so I have something to look forward to.
Someone who will call me and tell me about their day, remind me that there’s life beyond my house and tv and the internet. Pretend everything is normal and just talk to me. I’m weak, I’m not dead. If I’m too tired to talk, I’ll tell you.
Someone to send me verses and encouraging texts. I know it sounds terrible, but it feels like everyone was really supportive when they thought I might die, but now that I’m alive, and not serving everyone around me, it’s like I’ve slipped out of the collective consciousness. I feel guilty asking anyone to come see me or call me.
But I’m so depressed. I’m so lonely and tired of being tired. I’m terrified that when we start reducing my medication on Monday I’ll relapse and start losing proteins and swell up again. But I can’t wait to reduce the prednisone, because I know, at least in part, it’s causing my weakness, and fatigue, and depression, and anxiety, and sleeplessness, and dizziness, and acne, and moodiness and headaches, and pain, and shaky hands, and ravenous appetite and dehydration and electrolyte imbalances and the other ones that aren’t hitting me all the time, but come and go. Would I rather be on dialysis? No. Would I rather go back to being huge? No. Do I know that this, too, shall pass? Yes.
But it’s been 2 months. 2 months since I was able to call up a friend and plan to meet for coffee or go hang out with my Young Life girls. The hardest part about this is that I didn’t realize until last night that this isn’t just something I need to bear for a season, that will go back to normal as soon as I regain my strength. I’ve changed. I’ve grown much closer to my parents and my sister and her family, and I’ve watched in awe as my best friend drove 4 hours in the rain to see me in the hospital and then I have no idea how many hours to be with me on Easter. Another friend spent hours with me the evening before her finals week because I needed her, so she came. Another friend spent an afternoon of her spring break from med school just chilling, and has been consistent in her check-up calls. I have 3 really good friends. That’s a pretty cool thing.
But it hurts because I thought I had more than that. I thought I had been a good friend to more people than that. I know it’s awful to visit someone when they’re sick, especially in the hospital, and I appreciate those friends. I know it’s hard to call someone up that you haven’t talked to in a while and pretend to know what they’re talking about when they try to explain what’s wrong, and I appreciate those friends. I know how far away I live. I know it takes awhile. I just thought I was worth going out of your way for. That’s really what it comes down to. Because of this disease and the mind-numbing brakes that were put on my life, I’ve changed enough to see that I’ve made a life out of going out of my way for people, and those 3 friends---the ones I’ve had for at least 15 years each, are the only ones that really go out of their way for me,
I don’t want to guilt people into calling me or coming to visit me. Or maybe I do. I just want you to realize that this is really, really hard…and even though I’m improving, today was still harder than anything I’ve faced before.
I don’t want to make people feel bad when they see me or call. I give only the positive things. No one wants to hear how many minutes I can only walk a day before my legs give out, when I can put a positive spin on it and mention that I baked this or organized that, not mentioning that it took 3 hours in bed to recover from the 30 minute activity. I hoard my energy for trips to town, because the car trip can be torture, and I know it’s better if I use the cane over the wheelchair because people feel less upset then.
Everything, and I do mean everything, makes me tired. A shower uses up a quarter of the day’s energy, and usually requires lying down for awhile to make sure my heartrate goes down. I weed my garden for 15 minutes and am ready for a nap
Saturday, March 29, 2008
Saturday, March 22, 2008
Valleys Fill First
When I was a freshman in high school, my dear friend Austin sent me a cd for my birthday---all the way from Georgia. In so doing, he helped me learn to love Caedmon's Call, who produced a song in 2000 called "Valleys Fill First" that has been running through my head; especially the bridge that talks about the "long Saturday". The lyrics are posted below, but I thought I'd give a quick update as well.
I spent Monday through Wednesday at Mission Hospital, was pumped full of saline and potassium to balance out my electrolytes and make my dehydration go away. You see, there's this weird thing called post-ATN diuresis (ATN or Acute Tubular Necrosis was the damaged cells they found in my kidney biopsy that caused the ARF--or Acute Renal Failure that I had in the hospital--it happens every so often with Minimal Change Disease and I'm glad they caught and treated it when they did because well...I hadn't planned my funeral, and if I'm not going to live long enough to get married, I better have a super awesome funeral)
The post-ATN-diuresis basically means that my kidneys are confused, and even though I've been dehydrated, they're shooting out liquid as soon as it hits the kidneys, instead of putting most of it back into my blood. Because dehydration can cause even more kidney damage, and because no person should have to try and "keep up" with kidneys that are shooting out up to 7 liters of fluid, I returned to the hospital.
After the fluid kicked in I felt good for the first time in more than a month. Still very very weak, but I walked without dizziness or nausea. Apparently, what I assumed were side effects of the drugs were actually extreme dehydration and electrolyte imbalances. There were also some pretty nasty drug side effects, but I have chosen not to take the 2 that were causing severe muscle spasms and liver damage. Once my electrolytes were balanced and I stopped taking those drugs, I was able to stop taking pain killers and muscle relaxants, which will surely make those who had the opportunity to hear me "stoned" very pleased.
There's no getting around the fact that the last month has been a valley in my life. It's been hard, and I care about my friends and Young Life kids too much to gloss over that and pretend I have a giant religious band-aid to go over it. I'm used to finding my worth and security in pursuing excellence and serving others. But as even my health, my ability to think clearly and my strength have seemed to disappear, my identity remains. Even on the days when I looked in the mirror and had to laugh because it didn't even look like me, I am still a daughter, a sister, an aunt, a friend--and more than that, an adopted and loved child of a God who loves me enough He was willing to take the punishment for all the horrible things I've done, went through more pain than I have in the last month, and then after He died and pain my final price---he actually chose to come back so I would know and believe. That seems like identity enough for me.
I don't know what I'll be strong enough for tomorrow. I'm having to start making plans day by day instead of far into the future. The fact that I'm not on dialysis waiting for a transplant is a blessing. The fact that I'm growing in strength is a blessing. The fact that my family and closest friends have supported me--physically when I can't walk and emotionally when I can't handle it--is a huge blessing. This song pretty much covers all of my feelings-and it's much shorter than my long-winded description would be.
This is a valley
That I'm walking through
And it feels like forever
Since I've been close to You
My friends up above me
Don't understand why I struggle like I do
My shadow's my only, only companion
And at night he leaves too
Down in the valley, dying of thirst
I'm down in the valley
It seems that I'm at my worst
My consolation is that You baptized this earth
Well, down in the valley, valleys fill first
Down in this wasteland
I miss the mountaintop view
But it's here in this valley
That I'm surrounded by You
Though I'm not here by my will
It's where Your view is most clear
So I stay in this valley
If it takes 40 years
Down in the valley, dying of thirst
When I'm down in the valley
It seems that I'm at my worst
My consolation is that You baptized this earth
Well, down in the valley, valleys fill first
It's like that long Saturday
Between Your death and the rising day
When no one wrote a word
Wondered is this the end
But You were down there in the well
Saving those that fell
Bringing them to the mountain again
Though I'm down in the valley, dying of thirst
When I'm down in the valley
It seems that I'm at my worst
My consolation is that You baptized this earth
Well, down in the valley, valleys fill first
When You pour on Your water, valleys fill first
Thanks for your prayers and messages.
I spent Monday through Wednesday at Mission Hospital, was pumped full of saline and potassium to balance out my electrolytes and make my dehydration go away. You see, there's this weird thing called post-ATN diuresis (ATN or Acute Tubular Necrosis was the damaged cells they found in my kidney biopsy that caused the ARF--or Acute Renal Failure that I had in the hospital--it happens every so often with Minimal Change Disease and I'm glad they caught and treated it when they did because well...I hadn't planned my funeral, and if I'm not going to live long enough to get married, I better have a super awesome funeral)
The post-ATN-diuresis basically means that my kidneys are confused, and even though I've been dehydrated, they're shooting out liquid as soon as it hits the kidneys, instead of putting most of it back into my blood. Because dehydration can cause even more kidney damage, and because no person should have to try and "keep up" with kidneys that are shooting out up to 7 liters of fluid, I returned to the hospital.
After the fluid kicked in I felt good for the first time in more than a month. Still very very weak, but I walked without dizziness or nausea. Apparently, what I assumed were side effects of the drugs were actually extreme dehydration and electrolyte imbalances. There were also some pretty nasty drug side effects, but I have chosen not to take the 2 that were causing severe muscle spasms and liver damage. Once my electrolytes were balanced and I stopped taking those drugs, I was able to stop taking pain killers and muscle relaxants, which will surely make those who had the opportunity to hear me "stoned" very pleased.
There's no getting around the fact that the last month has been a valley in my life. It's been hard, and I care about my friends and Young Life kids too much to gloss over that and pretend I have a giant religious band-aid to go over it. I'm used to finding my worth and security in pursuing excellence and serving others. But as even my health, my ability to think clearly and my strength have seemed to disappear, my identity remains. Even on the days when I looked in the mirror and had to laugh because it didn't even look like me, I am still a daughter, a sister, an aunt, a friend--and more than that, an adopted and loved child of a God who loves me enough He was willing to take the punishment for all the horrible things I've done, went through more pain than I have in the last month, and then after He died and pain my final price---he actually chose to come back so I would know and believe. That seems like identity enough for me.
I don't know what I'll be strong enough for tomorrow. I'm having to start making plans day by day instead of far into the future. The fact that I'm not on dialysis waiting for a transplant is a blessing. The fact that I'm growing in strength is a blessing. The fact that my family and closest friends have supported me--physically when I can't walk and emotionally when I can't handle it--is a huge blessing. This song pretty much covers all of my feelings-and it's much shorter than my long-winded description would be.
This is a valley
That I'm walking through
And it feels like forever
Since I've been close to You
My friends up above me
Don't understand why I struggle like I do
My shadow's my only, only companion
And at night he leaves too
Down in the valley, dying of thirst
I'm down in the valley
It seems that I'm at my worst
My consolation is that You baptized this earth
Well, down in the valley, valleys fill first
Down in this wasteland
I miss the mountaintop view
But it's here in this valley
That I'm surrounded by You
Though I'm not here by my will
It's where Your view is most clear
So I stay in this valley
If it takes 40 years
Down in the valley, dying of thirst
When I'm down in the valley
It seems that I'm at my worst
My consolation is that You baptized this earth
Well, down in the valley, valleys fill first
It's like that long Saturday
Between Your death and the rising day
When no one wrote a word
Wondered is this the end
But You were down there in the well
Saving those that fell
Bringing them to the mountain again
Though I'm down in the valley, dying of thirst
When I'm down in the valley
It seems that I'm at my worst
My consolation is that You baptized this earth
Well, down in the valley, valleys fill first
When You pour on Your water, valleys fill first
Thanks for your prayers and messages.
Sunday, March 16, 2008
There and Back Again
I'm going to post a picture of my feet as soon as I can find my camera. My friends, they are beautiful. The knobly bits from horses stepping on me and years of cramming my feet into dance shoes or too-tight boots have shaped my feet into a glorious misshapen mass of oddness. But they are, and will forever be my feet--ridiculously high arches, skinny heels, funny toes and all. I love my feet.
So a month ago (approximately) this whole ordeal started--with the weight gain and the rage, and the swelling and the rage, and the hospital and the rage. Three weeks ago I was 41 lbs above my normal weight. I am now 9 lbs below my normal weight. 50 Pounds. Let me repeat that. In the last 3 weeks I have lost 50 pounds. It's like "The Biggest Loser" on crack because I'm not exercising (at all--something about dizziness not being "normal"-coulda fooled me) and even though I eat a very healthy diet sans sodium, fat, and cholesterol, 50 lbs seems a bit much.
It's very nice to fit back into my old clothes again. When I saw my primary care doctor on Friday and she stated that I had lost 18 lbs since my last visit a week prior, and oh, 20-odd pounds the week before that, I realized that, had I allowed pictures of things other than my feet and possessed far fewer scruples, I could have made a fortune writing a diet book. A fortune I would have then used for a noble purpose, like figuring out what the heck happened to me.
My blood tests this week were pretty positive. My cholesterol dropped 150 points (!!!!) It's still high, but not in the "well, you should have a heart attack in 3....2....1.." stage. My triglycerides dropped 50 points to a respectable 250--still high, but not high enough to keep one of my dangerous drug combos going--so I'm glad my chances of liver failure due to noxious drugs is slowly decreasing. Those silly little proteins keep slipping through my kidneys, but there's more chilling in my blood than before--hence the not looking like an uncomfortable balloon anymore. As expected, my electrolytes are a bit wacky still, so I get to continue pounding SmartWater and avoiding salt. Unexpectedly I found I contracted an infection (probably in the hospital) that's been lying low for the last few weeks, hidden by the steroids. Massive doses of antibiotics should knock it out--but it was a good wake up call to realize that maybe it would be best if I waited a bit before I returned to the classroom and all of it's germy-wonder.
I'm back home, glad that I was able to spend time at my sister's while my parents enjoyed their vacation, but thrilled to have my own bed and see my beautiful garden. When we got home last night, my daffodils and tulips were out in droves, and I was more than a bit shocked to see snow and hail on the ground from a freak storm. But my garden still grows. Despite the fact that it desperately needs weeding, that it just got bombarded with an ides-of-march storm, my garden will continue to grow. And maybe this year it won't be as strong or as beautiful as some, and this may be known as the year of the freak storm in the annals of garden history, but it's still alive. That's how I'm looking at this semester, this year. This last month has been nothing like my schedule. The next month probably won't go as planned either--unless my nephrologist tomorrow says something like "and here's a new experimental drug that should fix your kidneys, the weakness, and everything else in 3 hours." I won't lie and say I'm okay with that. I'm a control freak--always have been. But just like my poor garden that has been hit pretty hard this year by freak warm spells, freak cold spells, and a very distracted gardener, there are some things that are just out of my control.
The small blessings this week that keep me humming "How Great Thou Art" just like I did when I was so scared in the radiology rooms at the hospital:
1) Baby Audrey jumping on my bed and hugging my teddy bears
2) Great friends that came by at the perfect times, so I was rarely home alone at Calee's
3) Long distance phone calls with people I can talk about nothing and everything with
4) Being able to cut down on pain-killers and muscle relaxants and write a coherent sentence without having to think too hard--also being able to read again
5) Texts, messages, wall-posts, cards and emails from friends scattered around the globe--especially the card I received from friends and my pastor in Mullingar, Ireland. :-)
....This list could go on and on, but it's a long note already
"I scarce can take it in... My God, How Great Thou Art"
So a month ago (approximately) this whole ordeal started--with the weight gain and the rage, and the swelling and the rage, and the hospital and the rage. Three weeks ago I was 41 lbs above my normal weight. I am now 9 lbs below my normal weight. 50 Pounds. Let me repeat that. In the last 3 weeks I have lost 50 pounds. It's like "The Biggest Loser" on crack because I'm not exercising (at all--something about dizziness not being "normal"-coulda fooled me) and even though I eat a very healthy diet sans sodium, fat, and cholesterol, 50 lbs seems a bit much.
It's very nice to fit back into my old clothes again. When I saw my primary care doctor on Friday and she stated that I had lost 18 lbs since my last visit a week prior, and oh, 20-odd pounds the week before that, I realized that, had I allowed pictures of things other than my feet and possessed far fewer scruples, I could have made a fortune writing a diet book. A fortune I would have then used for a noble purpose, like figuring out what the heck happened to me.
My blood tests this week were pretty positive. My cholesterol dropped 150 points (!!!!) It's still high, but not in the "well, you should have a heart attack in 3....2....1.." stage. My triglycerides dropped 50 points to a respectable 250--still high, but not high enough to keep one of my dangerous drug combos going--so I'm glad my chances of liver failure due to noxious drugs is slowly decreasing. Those silly little proteins keep slipping through my kidneys, but there's more chilling in my blood than before--hence the not looking like an uncomfortable balloon anymore. As expected, my electrolytes are a bit wacky still, so I get to continue pounding SmartWater and avoiding salt. Unexpectedly I found I contracted an infection (probably in the hospital) that's been lying low for the last few weeks, hidden by the steroids. Massive doses of antibiotics should knock it out--but it was a good wake up call to realize that maybe it would be best if I waited a bit before I returned to the classroom and all of it's germy-wonder.
I'm back home, glad that I was able to spend time at my sister's while my parents enjoyed their vacation, but thrilled to have my own bed and see my beautiful garden. When we got home last night, my daffodils and tulips were out in droves, and I was more than a bit shocked to see snow and hail on the ground from a freak storm. But my garden still grows. Despite the fact that it desperately needs weeding, that it just got bombarded with an ides-of-march storm, my garden will continue to grow. And maybe this year it won't be as strong or as beautiful as some, and this may be known as the year of the freak storm in the annals of garden history, but it's still alive. That's how I'm looking at this semester, this year. This last month has been nothing like my schedule. The next month probably won't go as planned either--unless my nephrologist tomorrow says something like "and here's a new experimental drug that should fix your kidneys, the weakness, and everything else in 3 hours." I won't lie and say I'm okay with that. I'm a control freak--always have been. But just like my poor garden that has been hit pretty hard this year by freak warm spells, freak cold spells, and a very distracted gardener, there are some things that are just out of my control.
The small blessings this week that keep me humming "How Great Thou Art" just like I did when I was so scared in the radiology rooms at the hospital:
1) Baby Audrey jumping on my bed and hugging my teddy bears
2) Great friends that came by at the perfect times, so I was rarely home alone at Calee's
3) Long distance phone calls with people I can talk about nothing and everything with
4) Being able to cut down on pain-killers and muscle relaxants and write a coherent sentence without having to think too hard--also being able to read again
5) Texts, messages, wall-posts, cards and emails from friends scattered around the globe--especially the card I received from friends and my pastor in Mullingar, Ireland. :-)
....This list could go on and on, but it's a long note already
"I scarce can take it in... My God, How Great Thou Art"
Wednesday, March 12, 2008
World Kidney Day
Tomorrow is World Kidney Day. I had never heard of it until my obsessive internet searching for a magical cure ran across this website:
http://www.worldkidneyday.org/
Kidney Disease has changed my life. I still don't know exactly what was initially wrong with my kidneys that caused me to enter the hospital. I know I was losing protein, was swollen, and had gained a lot of weight in only a few days. I know that whatever was causing the initial damage was exacerbated by the small amount of contrast dye that managed to enter my system. I know that the doctors and nurses, held up by the prayers of family, friends and strangers, saved my life.
I now know what it feels like to gain an entire pregnancy's weight (41 lbs) in 6 days. I know what it feels like to lose all of that weight in 13 days and that the resulting electrolyte imbalances, dehydration, dizziness and nausea are wretched. My weakness and confusion, caused by all of the above plus my growing bag of medicine and restricted diet, have made me more depressed and, at the same time, more thankful for family and friends than I could have imagined.
I don't know when I'll be able to go back to school or work. I don't know when I'll be allowed in public without a wheelchair or cane to prevent passing out from my severe weakness. I don't even know when I'll be able to read and think again at my normal levels. I don't know if all of that weight will come back if I break my diet for a day or if I'll seemingly get better and then relapse again and again until I need dialysis or a transplant to function. I do know that my God is a very big God who is teaching me a very terrifying and very good lesson. (James 1:2-4)
I have learned so much about the kidneys and the possible diseases that can destroy them. Most people won't experience any symptoms until they are well beyond their 20's, but it's the 9th leading cause of death in the US. I'm not planning on being a part of that statistic. Although my specific possible diseases are very rare, 1 in 10 Americans will be diagnosed with kidney disease.
In the future, World Kidney Day will be my day to celebrate those who have walked beside me through this valley---your prayers, messages, texts, emails and visits have been, and will continue to be, greatly appreciated. If I had/have not tagged or cc-ed you, please forgive me. I'll blame it on my meds--that's pretty much what I do these days. I can't ask you all to donate blood or anything, but please read up on kidney disease--it might be years before it effects you or someone close to you, but still.
http://www.worldkidneyday.org/
Kidney Disease has changed my life. I still don't know exactly what was initially wrong with my kidneys that caused me to enter the hospital. I know I was losing protein, was swollen, and had gained a lot of weight in only a few days. I know that whatever was causing the initial damage was exacerbated by the small amount of contrast dye that managed to enter my system. I know that the doctors and nurses, held up by the prayers of family, friends and strangers, saved my life.
I now know what it feels like to gain an entire pregnancy's weight (41 lbs) in 6 days. I know what it feels like to lose all of that weight in 13 days and that the resulting electrolyte imbalances, dehydration, dizziness and nausea are wretched. My weakness and confusion, caused by all of the above plus my growing bag of medicine and restricted diet, have made me more depressed and, at the same time, more thankful for family and friends than I could have imagined.
I don't know when I'll be able to go back to school or work. I don't know when I'll be allowed in public without a wheelchair or cane to prevent passing out from my severe weakness. I don't even know when I'll be able to read and think again at my normal levels. I don't know if all of that weight will come back if I break my diet for a day or if I'll seemingly get better and then relapse again and again until I need dialysis or a transplant to function. I do know that my God is a very big God who is teaching me a very terrifying and very good lesson. (James 1:2-4)
I have learned so much about the kidneys and the possible diseases that can destroy them. Most people won't experience any symptoms until they are well beyond their 20's, but it's the 9th leading cause of death in the US. I'm not planning on being a part of that statistic. Although my specific possible diseases are very rare, 1 in 10 Americans will be diagnosed with kidney disease.
In the future, World Kidney Day will be my day to celebrate those who have walked beside me through this valley---your prayers, messages, texts, emails and visits have been, and will continue to be, greatly appreciated. If I had/have not tagged or cc-ed you, please forgive me. I'll blame it on my meds--that's pretty much what I do these days. I can't ask you all to donate blood or anything, but please read up on kidney disease--it might be years before it effects you or someone close to you, but still.
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