My parents can't agree on who should be the donor. Could you believe??? They both feel very strongly that it should be them, and it should not be the other. My parents are so crazy. Now, ever since I got the call from my mother, I've had an uneasy feeling about the whole thing, just all of a sudden. I've been thinking about it alot. I've been talking to friends, and my sister about it, and my husband. Most of them don't really understand. Whats worse, they don't understand how I could be so ungrateful and unappreciative that I have two people so willing to give me a kidney. But thats just it...
I read a story from a woman who had her father donate a kidney to her in 1975. She said that every year he sent her a card on the anniversary of the day he gave her a kidney. He said that he was lucky to be able to give birth to her twice.
You know the feeling that you have when you have a bill that needs to be paid, and you dont have the money for it? And every month goes by, and every time you get paid its on your mind that you STILL have that bill to pay? Or if you're in school, and you always, always have some homework assignment to be done. So whenever you're not doing homework, you feel like you need TO BE doing homework?
How can you ever repay the debt of a better life? How can you live knowing that you'll always owe? It seems to me that when people are so willing to donate, they are saying "Look how much I love you. I love you so much, look what I'm going to do for you." To have both my parents arguing, virtually competing for a chance to do this big thing for me, its terrifying.
I almost wish I could get a donor who I know is willing to do this simply because its necessary, not as a grand gesture. Now that the process is started, I don't want it to be either of my parents to tell the truth.
Friday, December 21, 2007
Wednesday, December 12, 2007
And we're off
So after I saw my doctor, I made the appointment for November 28 to have the HLA tissue typing done. We spent the whole day there, and then the following friday, which was Dec 7, I got a call from my mother to say she had gotten a call from the clinic to say that both she and my father were a match. She was a 5 point match out of 6, and my father was a four point match.
The coordinator explained to us during the class that these days anyone who is between a 1 and 5 point match can be a potential donor. Its the same difference between 1 and 5, the kidney will last the same legnth of years. For two people that are a 6 point match, the kidney has the potential to last much longer.
My mothers call kind of creeped me out. My mother and I are kind of close, but not in a real affectionate kind of way I guess. I don't know if that makes sense, but lets just quickly say that every year for my birthday I get to hear the story of how she almost died giving birth to me. How the doctors had told her she should have an abortion at 7 months, and she refused and made arrangements for my older brother and sister's care. Her phone call to tell me she "had news" kind of creeped my out in a way that I couldn't explain without sounding like an ungrateful jerk. It was that she was so enthusiastic, almost overly enthusiatic - excited I guess.
Anyway, the next phase now will be to decide who goes to the next round of testing.
The coordinator explained to us during the class that these days anyone who is between a 1 and 5 point match can be a potential donor. Its the same difference between 1 and 5, the kidney will last the same legnth of years. For two people that are a 6 point match, the kidney has the potential to last much longer.
My mothers call kind of creeped me out. My mother and I are kind of close, but not in a real affectionate kind of way I guess. I don't know if that makes sense, but lets just quickly say that every year for my birthday I get to hear the story of how she almost died giving birth to me. How the doctors had told her she should have an abortion at 7 months, and she refused and made arrangements for my older brother and sister's care. Her phone call to tell me she "had news" kind of creeped my out in a way that I couldn't explain without sounding like an ungrateful jerk. It was that she was so enthusiastic, almost overly enthusiatic - excited I guess.
Anyway, the next phase now will be to decide who goes to the next round of testing.
Tuesday, December 11, 2007
Long Time no blog
It's been a while, but its been a busy couple of months. I think I've picked the agency we want to move forward with adoption with, and I've gotten an ok to begin the transplant process from my nephrologist.
Since the transplant part is whats fresh in my mind right now, I'll save the adoption stuff for the next post.
I had an appointment with my nephrologist on November 19. We didn't get to go over my lab test results because Labcorp sucks and never gets her the tests before I get there. But we discussed my blood pressure which had not been under control for months and I asked her where I needed to be to get to eligibility for a transplant. She said that she was planning on asking me about that in January, but that there was no reason to wait until I had kidney failure. Watching my kidneys deteriorate has been like watching water boil. Its been slow going, although lately its been picking up. My last creatinine level was 3.8.
She said that my parents were the best choice as candidates, because in theory, whatever it was that made me sick in the first place hasn't been cured. And in theory, there is a possibility that whatever I had, maybe my siblings have too, just not showing it, or maybe it doesn't effect them. Plus, a transplant lasts like 20 years, so in 20 years maybe my parents won't be around, and I'll need to have my siblings to turn to then for another transplant.
So I went to both my parents and we called into register at the transplant clinic, and made an appointment to come down for match testing.
What did the initial testing consist of? Basically, we went in, and they took a shit load of blood from me, I mean a big butt load, like 16 viles. They gave my parents physical exams and took some of their blood as well. We had a presentation/class with the transplant coordinator to go over what to expect, what our options were, and to have any questions answered. That was like an hour My father decided to pick this time to doze off, even though we were at a round table with only about 5 other people. I told my mother to kick him, but her legs were too short. So, after that, I went to meet who I think was the transplant doctor. Dr. Lee. He asked me mad questions and gave me a quick look over. Blood pressure (it was 170/100 at first, and then dropped to 140/90 like 20 seconds later), checked for swelling, and my breathing. Thats pretty much it. The whole thing went from 10:30 to 4. I couldn't believe that we had spent the entire day there. From that point we just had to wait and see who was a match and what not.
Since the transplant part is whats fresh in my mind right now, I'll save the adoption stuff for the next post.
I had an appointment with my nephrologist on November 19. We didn't get to go over my lab test results because Labcorp sucks and never gets her the tests before I get there. But we discussed my blood pressure which had not been under control for months and I asked her where I needed to be to get to eligibility for a transplant. She said that she was planning on asking me about that in January, but that there was no reason to wait until I had kidney failure. Watching my kidneys deteriorate has been like watching water boil. Its been slow going, although lately its been picking up. My last creatinine level was 3.8.
She said that my parents were the best choice as candidates, because in theory, whatever it was that made me sick in the first place hasn't been cured. And in theory, there is a possibility that whatever I had, maybe my siblings have too, just not showing it, or maybe it doesn't effect them. Plus, a transplant lasts like 20 years, so in 20 years maybe my parents won't be around, and I'll need to have my siblings to turn to then for another transplant.
So I went to both my parents and we called into register at the transplant clinic, and made an appointment to come down for match testing.
What did the initial testing consist of? Basically, we went in, and they took a shit load of blood from me, I mean a big butt load, like 16 viles. They gave my parents physical exams and took some of their blood as well. We had a presentation/class with the transplant coordinator to go over what to expect, what our options were, and to have any questions answered. That was like an hour My father decided to pick this time to doze off, even though we were at a round table with only about 5 other people. I told my mother to kick him, but her legs were too short. So, after that, I went to meet who I think was the transplant doctor. Dr. Lee. He asked me mad questions and gave me a quick look over. Blood pressure (it was 170/100 at first, and then dropped to 140/90 like 20 seconds later), checked for swelling, and my breathing. Thats pretty much it. The whole thing went from 10:30 to 4. I couldn't believe that we had spent the entire day there. From that point we just had to wait and see who was a match and what not.
Friday, October 12, 2007
Lab Results
So I did get my labs back. And it looks like my creatinine has gone up to 3.7 since July, it was 3.1. A year ago it was 2.1. Also worth mentioning was that for the urinalysis, my protein was +4. For Vitamin D, I was at 10, which strikes me as interesting, since as of late my teeth have been falling out my head. It said that Vitamin D levels are supposed to be between 35 and 100. So pretty much, I'm way off. My hair is in pretty bad shape too.
I just got back from the dentist, and my bill is $1500 for all the work they have to do. And its not like I don't go to the dentist, I've lived at the dentist for the past three years. And he's telling me that we have a lot more shit to do. I got a crown put in today, which to me just looks like an enormous fake tooth. It's all blocky, like a big wooden block in my mouth. What was more depressing is that he had to file away a good tooth to make it fit right, and it still doesn't fit. They want me to pay $500 on Monday, and I have no idea how I'm going to do it. And he's telling me that I have to "commit" to getting the rest of the work done. Which basically means, commit my whole paycheck every month to him. I still have to get two implants, and something else done on the other side. I can't believe I actually have a tooth missing in my mouth because it rotted out. So I'm trying to find out if this is all because of my Vitamin D thing, and if the Vitamin D thing is yet another problem caused by my stupid kidneys.
People have no idea how much my life sucks.
I just got back from the dentist, and my bill is $1500 for all the work they have to do. And its not like I don't go to the dentist, I've lived at the dentist for the past three years. And he's telling me that we have a lot more shit to do. I got a crown put in today, which to me just looks like an enormous fake tooth. It's all blocky, like a big wooden block in my mouth. What was more depressing is that he had to file away a good tooth to make it fit right, and it still doesn't fit. They want me to pay $500 on Monday, and I have no idea how I'm going to do it. And he's telling me that I have to "commit" to getting the rest of the work done. Which basically means, commit my whole paycheck every month to him. I still have to get two implants, and something else done on the other side. I can't believe I actually have a tooth missing in my mouth because it rotted out. So I'm trying to find out if this is all because of my Vitamin D thing, and if the Vitamin D thing is yet another problem caused by my stupid kidneys.
People have no idea how much my life sucks.
Friday, October 5, 2007
OY VEY
Dude, I can't believe I STILL have not gotten my test results from my doctor. She's driving me nuts! All she has to do, is hand the paper to her secretary, and her secretary can go ahead and fax those papers to me. It's been all week.
Whats really freaking me out, is that this week, my blood pressure has been pretty much out of control. My neph. told me to double my dose of procardia, (even tho she's probably going to take me off of it since we have officially decided to not get pregnant), but all week on 60mgs of bp medicine, and its still in the 145/115 range. Lets not leave out the fact that my ankles look completely ridiculous. I took a lasix pill last night, but I don't think it really helped.
I've been paranoid all day. Went to the bathroom, and hoped no one would glimpse me through a crack in the stall door, leaning over the toilet, examining the bubbles in my pee, or the light color. It was really light, like just tinted water. And yeah , there was foam, like soap bubbles.
Anyhew, I hope I'll from my Dr. soon with these test results, I think I'm just bugging myself out.
Whats really freaking me out, is that this week, my blood pressure has been pretty much out of control. My neph. told me to double my dose of procardia, (even tho she's probably going to take me off of it since we have officially decided to not get pregnant), but all week on 60mgs of bp medicine, and its still in the 145/115 range. Lets not leave out the fact that my ankles look completely ridiculous. I took a lasix pill last night, but I don't think it really helped.
I've been paranoid all day. Went to the bathroom, and hoped no one would glimpse me through a crack in the stall door, leaning over the toilet, examining the bubbles in my pee, or the light color. It was really light, like just tinted water. And yeah , there was foam, like soap bubbles.
Anyhew, I hope I'll from my Dr. soon with these test results, I think I'm just bugging myself out.
Thursday, October 4, 2007
The waiting game
I always say that things are really about perspective. What's there is what you choose to see, and you can always choose to see bad or you can choose to see good. For a person to lose his legs can mean the end of his life, but for someone else who has no legs, that just IS his life. I think slowly, I'm starting to learn to embrace the concept of not experiencing pregnancy and birth. And really, it's not the end of the world, its actually the catalyst for a new world for me and my husband and whoever our baby is thats waiting for us out there. It's not what I envisioned, but its time for me to have a new vision, and run toward that.
What's harder to get a hold on, is this whole thing with my kidneys. Its like medical limbo, where apparently I'm not sick enough to be eligible for transplant, but at the same time, I feel like I'm struggling everyday with fatigue and food. I'm sooo tired, just ALL the time. At any point I could just lay down and go to sleep. It's frustrating not having energy, and to always have to push myself just to get through a basic day. I feel like I sleep for 12 hours a day, and still am always tired. My other struggle is with food. The salt restrictions are a real challenge. I'm way too tired to cook every single day, but when I'm out, in NYC, at work and everyone is having lunch at the cafes around, I really can't. And then I get depressed because I'm hungry, and then I just go and buy some pasta or something, but then my ankles and feet swell up. I'm looking a my feet now, with the tops bulging out of my ballet flats. I have nice feet normally, really I do! I feel like a person who is battling obesity, even though I get daily comments about how skinny I am. When I eat, I feel guilty, and even when I try to flavor my food with vinegar or lemon juice, it doesn't always come out that great and then I feel depressed.
I'm at the point where I'm hoping for kidney failure! Is that bad, I just want something to happen so I can get out of this rut. Whoever heard of feeling guilty or depressed when you eat? I'm tired of being tired. Hopefully, I'll be able to angle my thoughts to a positive perspective, I just have to find it.
I did go to the doctor this week, and they are supposed to fax me my lab report. So I'm just waiting, waiting, waiting, to see what kind of downward progress I made. How crazy is that?
What's harder to get a hold on, is this whole thing with my kidneys. Its like medical limbo, where apparently I'm not sick enough to be eligible for transplant, but at the same time, I feel like I'm struggling everyday with fatigue and food. I'm sooo tired, just ALL the time. At any point I could just lay down and go to sleep. It's frustrating not having energy, and to always have to push myself just to get through a basic day. I feel like I sleep for 12 hours a day, and still am always tired. My other struggle is with food. The salt restrictions are a real challenge. I'm way too tired to cook every single day, but when I'm out, in NYC, at work and everyone is having lunch at the cafes around, I really can't. And then I get depressed because I'm hungry, and then I just go and buy some pasta or something, but then my ankles and feet swell up. I'm looking a my feet now, with the tops bulging out of my ballet flats. I have nice feet normally, really I do! I feel like a person who is battling obesity, even though I get daily comments about how skinny I am. When I eat, I feel guilty, and even when I try to flavor my food with vinegar or lemon juice, it doesn't always come out that great and then I feel depressed.
I'm at the point where I'm hoping for kidney failure! Is that bad, I just want something to happen so I can get out of this rut. Whoever heard of feeling guilty or depressed when you eat? I'm tired of being tired. Hopefully, I'll be able to angle my thoughts to a positive perspective, I just have to find it.
I did go to the doctor this week, and they are supposed to fax me my lab report. So I'm just waiting, waiting, waiting, to see what kind of downward progress I made. How crazy is that?
Monday, September 3, 2007
Why don't you shut up
Generally, I don't talk to people about my health issues, and I most definitely don't talk about my ever-growing, intense desire to have a baby. A few people know, and I just want to say, if someone else says "why don't you adopt?" I will stab them in the eye with a pen. Of course I've thought about adoption, when anyone first finds out they can't have a kid, do you think they just go, oh, i guess we'll just never do anything. We'll just die childless. Adoption is like a fad right now, so why do people feel the need to tell me to "hey, did you think about adoption?" Of course I fucking think about adoption! Every celebrity in the world that is not already pregnant, is thinking about adoption. And then telling reporters that they are thinking about adoption. "I'm going green - I drive a hybrid and i buy expensive lightbulbs." "Oh? Well I'm thinking about adoption." Bastards. It's hard. Its a long drawn out process, where they peer into your life, and give you mounds of paper work. I read that it takes over a year in many cases.
Yes, I think about adoption, I want to adopt. I want a baby. But its really not that simple. Nothing ever is. Thanks a frikkin lot.
Yes, I think about adoption, I want to adopt. I want a baby. But its really not that simple. Nothing ever is. Thanks a frikkin lot.
Tuesday, August 28, 2007
Bad weather
Have you ever been in New York city, or any city for that matter I guess, and you had to walk really far, but the weather was really bad? Like if it was really windy, or freezing cold, or raining like a motherfucker? And it seems like you are walking, and you're trying to walk fast because you want to just hurry up and get to where you're trying to go, or just get out of the crappy weather, and you just don't go anywhere. Its like the wind holds back your steps. Or like the rain falls on you footprints, and erases your progress. Even the cold freezes your muscles, so when it seems like you're walking regular, you're actually walking in slow motion. And then it seems like the rain won't ever stop, and you won't ever get to where you want to be.
Do you ever feel like that? Like you've spent all this time walking, but you've not actually gotten anywhere? And like you'll never make it to where you're trying to go, just spend the rest of your life walking against the wind.
Do you ever feel like that? Like you've spent all this time walking, but you've not actually gotten anywhere? And like you'll never make it to where you're trying to go, just spend the rest of your life walking against the wind.
Friday, August 10, 2007
Back and Forth
Sooooo, I visited my regular OB GYN earlier this week. And she seemed a little ticked off that I had gone for another opinion. Especially considering that the new doctor didn't tell me anything I didn't already know. She did a really good job of calming my week long freak-out. She said that the polyps were nothing, that I could still get pregnant with them there, and there was no need to do anything. Panic attack completely unnecessary. She said if I don't get pregnant, we would check it out in six months to see where they were at. No worries.
She said that I already knew the risks of getting pregnant, and thats just what they were, risks. Meaning, it could be bad, it could be fine. The only way to know is to actually do it. The guarantee is that I will likely be on bed rest and or in the hospital for much of the time.
So okay, we are covering much trodden ground here. My problem is that I keep going back and forth with what I want to do. This month has been kind of tough financially, and I'm feeling like hey, we can't handle a kid right now. Even though last month, I was totally ready to go.
My husband is in a ridiculous battle with his ex over their daughter (who lies and tells people their kid has cancer, just to keep the father away???), and I'm feeling like I'm being unfair to him by asking him to hold down the fort on his own while I'm bed ridden. But, I feel like everyday coming into work, I run into at least a dozen women with enormously protruding bellies, and it makes my heart ache.
I browsed through a couple of adoption sites, and it seems like a HUGE hassle to adopt!! I would love to, and I do intend to one day, but we have so much going on with my health, and his daughter, and finances, and work, it seems like the extra responsibility of filling out paper work, and having your life peered into would be too, TOO overwhelming. I know, versus being bedridden and facing esrd and dialysis? That we're ready for, or I should say I'm ready for. But this adoption stuff, it seems like too much right now. Besides, how hard is it to be stuck doing nothing for 7, or hopefully 9 months. Oh, the horror of not being able to get up at 5 am, to travel three hours, and get home at 9 pm!!
In any case, looking through those adoption sites, Iknow its something I definately want to do, but I can't accept that as a substitute to having a baby that I made, that we made together, ourselves. So I'm torn.
You are so cruel.
She said that I already knew the risks of getting pregnant, and thats just what they were, risks. Meaning, it could be bad, it could be fine. The only way to know is to actually do it. The guarantee is that I will likely be on bed rest and or in the hospital for much of the time.
So okay, we are covering much trodden ground here. My problem is that I keep going back and forth with what I want to do. This month has been kind of tough financially, and I'm feeling like hey, we can't handle a kid right now. Even though last month, I was totally ready to go.
My husband is in a ridiculous battle with his ex over their daughter (who lies and tells people their kid has cancer, just to keep the father away???), and I'm feeling like I'm being unfair to him by asking him to hold down the fort on his own while I'm bed ridden. But, I feel like everyday coming into work, I run into at least a dozen women with enormously protruding bellies, and it makes my heart ache.
I browsed through a couple of adoption sites, and it seems like a HUGE hassle to adopt!! I would love to, and I do intend to one day, but we have so much going on with my health, and his daughter, and finances, and work, it seems like the extra responsibility of filling out paper work, and having your life peered into would be too, TOO overwhelming. I know, versus being bedridden and facing esrd and dialysis? That we're ready for, or I should say I'm ready for. But this adoption stuff, it seems like too much right now. Besides, how hard is it to be stuck doing nothing for 7, or hopefully 9 months. Oh, the horror of not being able to get up at 5 am, to travel three hours, and get home at 9 pm!!
In any case, looking through those adoption sites, Iknow its something I definately want to do, but I can't accept that as a substitute to having a baby that I made, that we made together, ourselves. So I'm torn.
You are so cruel.
Sunday, August 5, 2007
Back from the specialist...
So my husband and I went to see this doctor at Cornell Weill Medical Center, who specializes in hypertension and pregnancy, and who has a lot of experience dealing with pregnancy and kidney issues. I guess I thought that she would say "yes it will be hard, but this is what I do, we can get you through this." And I thought my husband would be reassured, and more confident to move forward with attempting to conceive. All of that backfired.
"If I were your mother," she said when I asked her what SHE would do, "I would not want you to go forward with pregnancy. Its not just you that we are concerned about, its this baby who would have to fight to survive if born too early."
What if, what if, what if! What if the baby is born too early? What if you have kidney failure during the pregnancy? What if your baby dies? I asked my husband what is wrong with me, that I find it so hard to accept what I'm being told. His response was that I only think about myself.
She said that we should try to drag out kidney function for as long as possible. THEN, when I have kidney failure down the road, I can go on dialysis, get a transplant, and then try to conceive. This logic doesn't make sense to me at all.
What if my kidneys last for another ten years? What if I can't get a match for a donor? What if I get a match and my body rejects the transplant? What if I have to be on dialysis for years after ESRD? What if I get MORE cysts and have to have my one good ovary removed? What if something else obscure and unforseen happens to me next?!?! GOD, what is kidney failure going to be like??!
I would like to have some control over something in my life. Just ONE thing instead of everyday just waiting to see what will happen next, and hearing from my doctors all the damn time "we can't say for sure."
When my mother was pregnant with me, her doctors told her to terminate the pregnancy at seven months. They told her that if she continued, she would lose her baby and die. Either that, or she could deliver while I was only three pounds. For her, it was her heart. They said that her heart would not be able to withstand the strain of delivery. She made arrangements for my older brother and sister and got her affairs in order. She told her doctors not to do anything. I was born three weeks early at seven pounds, thirteen ounces, my mother's heart stopped twice. I asked her if she knew what was ahead of her, would she have had me anyway. She said yes. She doesn't know that I want to have a baby.
My husband has a daughter, from a previous relationship. Believe me when I say, she looks NOTHING like him. But she's going to be ten soon, and as she gets older, I can actually see him in her. They both raise there eyebrows the exact same way. And every time I think about that my heart clamps up. It's not fair. We've been together for eight years, and he has always pressured me to have children, and all this time I was the one waiting until we were ready, more stable. It seems like he was able to staunch his desire for a baby pretty easily. I wish I knew how.
I have an appointment tomorrow with my regular OB GYN. We'll probably discuss this polyp, aka Nature's IUD. Aka, God's way of painting on my forehead, "YOU ARE NOT TO BRING ANY CHILDREN INTO THIS WORLD." Just in case if I get defiant and try to have a baby anyway.
"If I were your mother," she said when I asked her what SHE would do, "I would not want you to go forward with pregnancy. Its not just you that we are concerned about, its this baby who would have to fight to survive if born too early."
What if, what if, what if! What if the baby is born too early? What if you have kidney failure during the pregnancy? What if your baby dies? I asked my husband what is wrong with me, that I find it so hard to accept what I'm being told. His response was that I only think about myself.
She said that we should try to drag out kidney function for as long as possible. THEN, when I have kidney failure down the road, I can go on dialysis, get a transplant, and then try to conceive. This logic doesn't make sense to me at all.
What if my kidneys last for another ten years? What if I can't get a match for a donor? What if I get a match and my body rejects the transplant? What if I have to be on dialysis for years after ESRD? What if I get MORE cysts and have to have my one good ovary removed? What if something else obscure and unforseen happens to me next?!?! GOD, what is kidney failure going to be like??!
I would like to have some control over something in my life. Just ONE thing instead of everyday just waiting to see what will happen next, and hearing from my doctors all the damn time "we can't say for sure."
When my mother was pregnant with me, her doctors told her to terminate the pregnancy at seven months. They told her that if she continued, she would lose her baby and die. Either that, or she could deliver while I was only three pounds. For her, it was her heart. They said that her heart would not be able to withstand the strain of delivery. She made arrangements for my older brother and sister and got her affairs in order. She told her doctors not to do anything. I was born three weeks early at seven pounds, thirteen ounces, my mother's heart stopped twice. I asked her if she knew what was ahead of her, would she have had me anyway. She said yes. She doesn't know that I want to have a baby.
My husband has a daughter, from a previous relationship. Believe me when I say, she looks NOTHING like him. But she's going to be ten soon, and as she gets older, I can actually see him in her. They both raise there eyebrows the exact same way. And every time I think about that my heart clamps up. It's not fair. We've been together for eight years, and he has always pressured me to have children, and all this time I was the one waiting until we were ready, more stable. It seems like he was able to staunch his desire for a baby pretty easily. I wish I knew how.
I have an appointment tomorrow with my regular OB GYN. We'll probably discuss this polyp, aka Nature's IUD. Aka, God's way of painting on my forehead, "YOU ARE NOT TO BRING ANY CHILDREN INTO THIS WORLD." Just in case if I get defiant and try to have a baby anyway.
Wednesday, August 1, 2007
My achy heart
I had a long talk with my husband about this new twist with the polyps. He wants to hold off on the baby thing for now. Wait until I get better. He said it might be a sign that this isn't the right time. I told him that if our baby was here, that we would do everything we could for it, despite the risks, and that our baby is somewhere waiting to come to us, so why wouldn't we work hard, despite the risks now? He said that I wasn't being fair to him, because he is the one that has to be helpless while I go through the hospital stays, and the scares, and the being sick. That I hadn't considered that maybe he wouldn't be able to handle that. Which he is right, which is true. He is so strong, he has a daughter that survived luekemia already, and he deals with those things much better than I would, but I think the prospect of seeing that in our future, and running toward it anyway, is scary for him.
I don't know, I couldn't even cry last night. It's so amazing to me how much my heart aches over all of this. I don't know if in my whole life I have ever been so sad. Its not a targeted pain, its just a overall, everyday gloom in my world. Its crazy. I keep up a good face though. People don't know. Not even my parents. I think my husband is the only one who really knows how much I'm falling apart inside.
I had my meeting with my managers yesterday, and they were just like, er ok. I did leave out the baby part though, but I explained to them that I was sick and that I would probably be running back and forth to the doctors a lot over the next few months. And if I miss meetings, or come late, or leave early, thats why. But I would do my best to NOT miss work. They didn't want to know details, they didn't want to know anything. But my one manager did take that opportunity to announce to us that his wife is pregnant. Ouch. You are so cruel.
I have a lot of hope riding on this meeting with this new specialist tomorrow. I keep googling her name to see her research and case studies. I think if anyone can help me get straight answers, she can. And then I meet with my regular OB GYN to see what to do about these polyps. My husband will be coming with me, so hopefully we can get on the same page, and it won't be me inundating him with second hand info. We'll see what happens.
I don't know, I couldn't even cry last night. It's so amazing to me how much my heart aches over all of this. I don't know if in my whole life I have ever been so sad. Its not a targeted pain, its just a overall, everyday gloom in my world. Its crazy. I keep up a good face though. People don't know. Not even my parents. I think my husband is the only one who really knows how much I'm falling apart inside.
I had my meeting with my managers yesterday, and they were just like, er ok. I did leave out the baby part though, but I explained to them that I was sick and that I would probably be running back and forth to the doctors a lot over the next few months. And if I miss meetings, or come late, or leave early, thats why. But I would do my best to NOT miss work. They didn't want to know details, they didn't want to know anything. But my one manager did take that opportunity to announce to us that his wife is pregnant. Ouch. You are so cruel.
I have a lot of hope riding on this meeting with this new specialist tomorrow. I keep googling her name to see her research and case studies. I think if anyone can help me get straight answers, she can. And then I meet with my regular OB GYN to see what to do about these polyps. My husband will be coming with me, so hopefully we can get on the same page, and it won't be me inundating him with second hand info. We'll see what happens.
Tuesday, July 31, 2007
Hopelessly Optimistic
Yesterday I had a sonogram done. First they did it through my stomach, and then went in with that wand thing. Its dumb, but all the time I was watching the screen thinking that there was going to be a little suprise on there.
When I woke up yesterday morning, I had a splitting headache. It was so bad, I felt like the whole room was spinning around me. I got up anyway, a little earlier than usual actually, since I wanted to catch an earlier train. My stomach was all wonky. But I got in the car and headed to the train station. I made it about halfway, before I had to pull over and vomit on the side of the road. I lost about four minutes with that, but I didn't miss the train. And I didn't lose the last two advils that I took before I left the house! When I got on the train, I had to run to that nasty ass bathroom they have on there too. But by then there was nothing left, and the headache didn't go away.
I came to work feeling like a hot bag of shit, and I think everyone noticed because people kept asking me what was wrong. Actually, in about 15 minutes, I have a meeting with my two managers to explain to the them the situation, sans the baby part of it. I went to have my sonogram done yesterday, and I was gone for two hours, and I missed two meetings! I'm nervous as hell, because I'm afraid I am putting my job in jeopardy, and my future with this company.
So anyway, sonogram. "I'm going to have to get the doctor to come and look at this, it looks like a polyp, and if it is, that could be a deterrent in you getting pregnant." I got my little surprise alright. Did they think I don't have enough deterrents? This burly old man came in, and as sweetly as he could asked me to spread my legs widers, and he put in the whatever its called, duck looking things, and swabbed around me with iodine, and then he snaked this long tube into me, and injected saline solution. "Ohhhh, yep!" he said as the stuff dripped down my bottom, "right there!" Fuck.
I came back to work, 45 minutes before the day was over, with the stuff still running out of me. At least my headache had gone away by that point, and I stopped throwing up. Oh, and it seems that I have only one functioning ovary, she said she couldn't get a good look at the other one, but that it looked really small.
Well, I have this appointment with this new specialist on thursday. So we'll see what she says.
When I woke up yesterday morning, I had a splitting headache. It was so bad, I felt like the whole room was spinning around me. I got up anyway, a little earlier than usual actually, since I wanted to catch an earlier train. My stomach was all wonky. But I got in the car and headed to the train station. I made it about halfway, before I had to pull over and vomit on the side of the road. I lost about four minutes with that, but I didn't miss the train. And I didn't lose the last two advils that I took before I left the house! When I got on the train, I had to run to that nasty ass bathroom they have on there too. But by then there was nothing left, and the headache didn't go away.
I came to work feeling like a hot bag of shit, and I think everyone noticed because people kept asking me what was wrong. Actually, in about 15 minutes, I have a meeting with my two managers to explain to the them the situation, sans the baby part of it. I went to have my sonogram done yesterday, and I was gone for two hours, and I missed two meetings! I'm nervous as hell, because I'm afraid I am putting my job in jeopardy, and my future with this company.
So anyway, sonogram. "I'm going to have to get the doctor to come and look at this, it looks like a polyp, and if it is, that could be a deterrent in you getting pregnant." I got my little surprise alright. Did they think I don't have enough deterrents? This burly old man came in, and as sweetly as he could asked me to spread my legs widers, and he put in the whatever its called, duck looking things, and swabbed around me with iodine, and then he snaked this long tube into me, and injected saline solution. "Ohhhh, yep!" he said as the stuff dripped down my bottom, "right there!" Fuck.
I came back to work, 45 minutes before the day was over, with the stuff still running out of me. At least my headache had gone away by that point, and I stopped throwing up. Oh, and it seems that I have only one functioning ovary, she said she couldn't get a good look at the other one, but that it looked really small.
Well, I have this appointment with this new specialist on thursday. So we'll see what she says.
Friday, July 27, 2007
Getting to the bottom of things
Something about the summer makes me always want to write. From the time I was about 9 years old, I've had countless journal and diary entries that begin: "today was my brother's birthday." Indeed, my little brother turned 22 this week. Happy birthday kid!
I have an appointment to meet with a specialist next Thursday. Not that my nephrologist and my OB GYN are not specialists, I love them both. They're the best. My problem is that they both know a lot about their area of interest, but they don't know much about how they relate to each other. This is why I get a lot of "well, I can't promise" and "theres no way to say for sure." This particular specialist has written articles, given lectures, and done plenty of research on pregnancy, hypertension, and CKD. And from what I understand, she has treated plenty of people who have been in my very boat.
Here's what I plan to ask her.
I have an appointment to meet with a specialist next Thursday. Not that my nephrologist and my OB GYN are not specialists, I love them both. They're the best. My problem is that they both know a lot about their area of interest, but they don't know much about how they relate to each other. This is why I get a lot of "well, I can't promise" and "theres no way to say for sure." This particular specialist has written articles, given lectures, and done plenty of research on pregnancy, hypertension, and CKD. And from what I understand, she has treated plenty of people who have been in my very boat.
Here's what I plan to ask her.
- What is making it difficult for me to get pregnant now?
- What happens if I have kidney failure during pregnancy?
- Where am I in the range of risk based on my lab results?
- Will I be able to get matched for a donor during pregnancy?
- Would there be any reason why I couldn't skip dialysis and go straight to transplant?
- What is the prelimenary process for deciding to transplant?
- What are the specific dangers to the baby?
- How soon are we able to determine how/if the baby is effected?
- What is the deciding factor of if and when I need to go on bed rest?
- Are my hair, teeth and skin effected by my loss of kidney function?
I think thats it for now. If I think of anything else, I'll add it later.
Toodles!
Tuesday, July 24, 2007
It all started when...
Growing up, I always had some kind of issue. I have two brothers and a sister, and even though my sister had asthma, I was constantly getting sent home from school because of my eczema. I raked holes in my skin until I bled, and even then I wouldn't stop. I still have scars and discolorations all over my body because I was such a mess with the problems I had with my skin.
When I was 11, my mother started me in ice skating, and I loved it. I still do, even though I don't do it as much. But my parents didn't have money like the other girls parents did, so it was always a big deal for me to have the outfits and the equiment and the lessons. When I was 13 I begged my mother to let me get a job, and she told me I had to wait until I was 15, but I wanted to help pay for my lessons. I called the ice rink at the Concord Hotel and asked them if they wanted someone to give lessons to the guests.
December of 1995, I started my first job as a skating instructor at a local Jewish resort hotel. During the holiday I was making about $20 an hour, in cash, off the books. I was working full days from 10 am to 6 pm, with an hour for lunch. I totally loved it.
I was so good at it, no matter what the kid was like; bad, over zealous, clumsy, stubborn. If they didn't leave at the end of the 25 minutes knowing how to ice skate, they had so much fun. I even had a girl once with one hand, and she was so self conscious, but after 10 minutes, we were total buddies. At 14, I had so many mothers come to me and say "I can't believe it!" It was the best job ever. I must have worked myself into the ground, though.
During the week between Christmas and New Years I had a different symptom each day. At first I noticed my eyes kept that morning puffiness throughout the whole day. Then I remember having intense headaches. I remember I had flu symptoms. I was so weak and tired, I remember apologizing to a mother, and she told me I looked so horrible, that I should use the lesson time to just rest. She paid for the lesson anyway. I remember running across the mini golf area on the picks of my skates to get to the bath room to throw up. Finally, I remember trying to leave at the end of the day, and I could barely walk. I got halfway through the hotel to get to the lobby where my father would pick me up, and I had to sit on the floor. I sat there for about 20 minutes until a co-worker came along and made me get up to go the rest of the way.
1996 was a nightmare. I was the nutty professor with random parts of my body swelling up. My stomach looked pregnant, my neck swelled and disappeared. I couldn't walk because my feet swelled on the bottoms. I would wake up with my own hand prints on my legs. Visit after visit to the family doctor, to homeopathic doctors who kept me on miserable diets, until finally I got a call after some lab tests that landed me in Westchester Medical Center for three weeks.
I had MPGN, which is an inflammation of the kidneys that is most common with young people, as I was told. I went up to 160, down to 123 overnight, literally. During that time, they found ovarian systs that they thought might be causing me the worst abdominal pain I could ever imagine. I had surgery to have those removed, along with my appendix. By September, I was back to normal. By January, I was off all my medication. I thought it was all over, until two years ago when I noticed my ankles were swelling up again.
When I was 11, my mother started me in ice skating, and I loved it. I still do, even though I don't do it as much. But my parents didn't have money like the other girls parents did, so it was always a big deal for me to have the outfits and the equiment and the lessons. When I was 13 I begged my mother to let me get a job, and she told me I had to wait until I was 15, but I wanted to help pay for my lessons. I called the ice rink at the Concord Hotel and asked them if they wanted someone to give lessons to the guests.
December of 1995, I started my first job as a skating instructor at a local Jewish resort hotel. During the holiday I was making about $20 an hour, in cash, off the books. I was working full days from 10 am to 6 pm, with an hour for lunch. I totally loved it.
I was so good at it, no matter what the kid was like; bad, over zealous, clumsy, stubborn. If they didn't leave at the end of the 25 minutes knowing how to ice skate, they had so much fun. I even had a girl once with one hand, and she was so self conscious, but after 10 minutes, we were total buddies. At 14, I had so many mothers come to me and say "I can't believe it!" It was the best job ever. I must have worked myself into the ground, though.
During the week between Christmas and New Years I had a different symptom each day. At first I noticed my eyes kept that morning puffiness throughout the whole day. Then I remember having intense headaches. I remember I had flu symptoms. I was so weak and tired, I remember apologizing to a mother, and she told me I looked so horrible, that I should use the lesson time to just rest. She paid for the lesson anyway. I remember running across the mini golf area on the picks of my skates to get to the bath room to throw up. Finally, I remember trying to leave at the end of the day, and I could barely walk. I got halfway through the hotel to get to the lobby where my father would pick me up, and I had to sit on the floor. I sat there for about 20 minutes until a co-worker came along and made me get up to go the rest of the way.
1996 was a nightmare. I was the nutty professor with random parts of my body swelling up. My stomach looked pregnant, my neck swelled and disappeared. I couldn't walk because my feet swelled on the bottoms. I would wake up with my own hand prints on my legs. Visit after visit to the family doctor, to homeopathic doctors who kept me on miserable diets, until finally I got a call after some lab tests that landed me in Westchester Medical Center for three weeks.
I had MPGN, which is an inflammation of the kidneys that is most common with young people, as I was told. I went up to 160, down to 123 overnight, literally. During that time, they found ovarian systs that they thought might be causing me the worst abdominal pain I could ever imagine. I had surgery to have those removed, along with my appendix. By September, I was back to normal. By January, I was off all my medication. I thought it was all over, until two years ago when I noticed my ankles were swelling up again.
Monday, July 23, 2007
When it all falls down
I know that everyone knows that I played myself on friday. I was completely in la-la land. I actually got my period, and STILL thought that maybe I could be pregnant. I am completely and wholly starting to lose my mind right now.
I actually snooped on my husband last night, and looked at his myspace inbox thinking I would find something that he didn't intend for me to see. Before I tell you what I did see, let me say that my husband is the blood that keeps me alive. He makes my heart beat, and he makes my body go every single day. We have been together for 8 years, and we have been through so much, I was so convinced in my heart that we would both stop living without the other one there. In my rose colored mind, I have this idea that the love that is between us is so exclusive and so special, that no one else can see it or feel it or understand. That its more than anything than anyone has ever felt. Thats how strongly we felt for each other. So with that, I see a message in his box from a girl that I had never met or heard of before, and she's lamenting to him about her boyfriend, and how he tells her that he loves her, and she knows that she loves him, but she just can't stand to be with him because of all the things she does. His reply was that he had to go and play his game, but that she was too hot to be crying over any guy. And that if he (my husband) was not married, "his loss would be my gain."
Now, here I am, feeling about as secure as a mouse in a lion's cage, and I just start thinking, wow, he has a whole relationship with some girl that I never even met. He knows everything about me, but I don't know everything about him. And then I start thinking, what happens when I'm pregnant, and bed ridden, or locked away in some hospital, who is he going to turn to when I'm not there?? Will we start to grow apart? And for what reason could any female possibly have for confiding in someone's husband? Does this bitch not have a mother, or a sister, or a cousin, or a friend?!
Whats worse, I can't ask him about it, because what business do I have going through his mail? I've never done it before, and I have learned my lesson, I will never do it again, but at this point, I just feel like everything is crashing down around me. My whole world run by our perfect love is retarded. He's a GUY. And guys are human, if the person they love is not there, or not able to love them back, then its natural and understandable that they would be drawn to someone that does. And I couldn't blame him, really, how much can I expect him to put up with? I can't remember the last time I felt so desperate and just at the end of my line. When is this going to turn around?
I started reading other people's blog, and I keep telling myself that I need to be cheerful like that. I need to have hope like that so if anyone reads this they will know that its not all bad. but I'm just like, I can't stand it. I feel like I'm just falling, and not able to do anything but wait to hit the bottom. If something happens, then I can deal with it, but to just sit here, and waiting, waiting, waiting for kidney failure, or waiting for the next cycle, its all sucking the joy from my life. I have never been so beaten.
On a more technical note, from reading other blogs, it seems like there has to be some sort of panel review to approve a kidney transplant. I have to get more information about this, and I'm also trying to get an answer to this question, "can you not pee while you are on dialysis?"
I actually snooped on my husband last night, and looked at his myspace inbox thinking I would find something that he didn't intend for me to see. Before I tell you what I did see, let me say that my husband is the blood that keeps me alive. He makes my heart beat, and he makes my body go every single day. We have been together for 8 years, and we have been through so much, I was so convinced in my heart that we would both stop living without the other one there. In my rose colored mind, I have this idea that the love that is between us is so exclusive and so special, that no one else can see it or feel it or understand. That its more than anything than anyone has ever felt. Thats how strongly we felt for each other. So with that, I see a message in his box from a girl that I had never met or heard of before, and she's lamenting to him about her boyfriend, and how he tells her that he loves her, and she knows that she loves him, but she just can't stand to be with him because of all the things she does. His reply was that he had to go and play his game, but that she was too hot to be crying over any guy. And that if he (my husband) was not married, "his loss would be my gain."
Now, here I am, feeling about as secure as a mouse in a lion's cage, and I just start thinking, wow, he has a whole relationship with some girl that I never even met. He knows everything about me, but I don't know everything about him. And then I start thinking, what happens when I'm pregnant, and bed ridden, or locked away in some hospital, who is he going to turn to when I'm not there?? Will we start to grow apart? And for what reason could any female possibly have for confiding in someone's husband? Does this bitch not have a mother, or a sister, or a cousin, or a friend?!
Whats worse, I can't ask him about it, because what business do I have going through his mail? I've never done it before, and I have learned my lesson, I will never do it again, but at this point, I just feel like everything is crashing down around me. My whole world run by our perfect love is retarded. He's a GUY. And guys are human, if the person they love is not there, or not able to love them back, then its natural and understandable that they would be drawn to someone that does. And I couldn't blame him, really, how much can I expect him to put up with? I can't remember the last time I felt so desperate and just at the end of my line. When is this going to turn around?
I started reading other people's blog, and I keep telling myself that I need to be cheerful like that. I need to have hope like that so if anyone reads this they will know that its not all bad. but I'm just like, I can't stand it. I feel like I'm just falling, and not able to do anything but wait to hit the bottom. If something happens, then I can deal with it, but to just sit here, and waiting, waiting, waiting for kidney failure, or waiting for the next cycle, its all sucking the joy from my life. I have never been so beaten.
On a more technical note, from reading other blogs, it seems like there has to be some sort of panel review to approve a kidney transplant. I have to get more information about this, and I'm also trying to get an answer to this question, "can you not pee while you are on dialysis?"
Sunday, July 22, 2007
Friday night and the weekends here...
Ok, actually its Sunday night, and back to work tomorrow. I tried to do some relaxing this weekend, hung out and have some fun. I actually went to the club last night and had a drink even though I had promised myself that I would stop drinking. No, I'm not an alcoholic or anything. I'm not even really a heavy drinker, although I do tend to have too much when I go out. I just so happen to know that the liquor makes my blood pressure go up... is that how you spell liquor? Anyway, I've been out a couple times, and had nothing but cranberry juice and water, and maybe seltzer sometimes. And I was having fun, but last night people kept on offering me drinks, MAD people just kept asking! And I was not having a goof time at all, and I was feeling very much in need of a good time. So I figured Iwould make an exception and have a drink. Amaretto sour, and it wasn't the breath of fresh air that I thought it would be. It didnt even loosen me up to be disillusioned into having a good time. I was just tired faster, and ready to go home. As it was, my friend I was with DID enjoy her drinks, and apparently had a blast. It was her birthday.
Who knows, I'm 26, but maybe I am starting to out grow the whole club thing. I feel like the loud music and crowds, and just dancing my ass off is the biggest release for me, but I don't seem to get that anymore. I need to find a new release, whatever that will be, everybody needs one, no?
Who knows, I'm 26, but maybe I am starting to out grow the whole club thing. I feel like the loud music and crowds, and just dancing my ass off is the biggest release for me, but I don't seem to get that anymore. I need to find a new release, whatever that will be, everybody needs one, no?
Friday, July 20, 2007
Not a wink
I work for an ad agency on madison ave in mid-town Manhattan. And i live in the beautiful mountains of the Hudson Valley. It takes me exactly three hours door to door to get to work every day. Thats twenty minutes to drive to the train, 2 hours on the train, 15 minutes on the path (subway) and about 20 minutes of walking. How much is that? Ok, 2 hours and 55 minutes, but usually its give or take. I know its insane, people tell me so every time the question comes up.
"Where do you live?" I inevitably get asked every day. "Do you know where Woodbury Commons is?" I say. Usually people in NY have heard of this enormous shopping outlet. "Well I'm about 40 minutes north of there." That usually incites the reaction, expletives, reprimands, and the "are you crazy??"s. Its funny, because people flip out every time, and its entertaining. The truth is, it DOES suck getting up so early, and having such a long day. I leave at 6 am and usually get back home at about 9 pm. But the thing is, to me it doesn't suck any more than working, period. I like working, I like having a job, and I like having a real job with real benefits where they don't write you up for not wearing a uniform, or certain color shoes. I like it that I'm at work right now, and I'm sitting here blogging. Yes its a long ass commute, but it beats the hell out of sitting at home doing nothing, or working at Olive Garden.
The trouble is that the fatigue that comes along with low kidney function makes things really tough. Sometimes I have to pep talk myself into getting off the train after the two hour ride. Most of the time, I just want to sit there. And if you could hear my mind speaking during the 10-12 block walk, you would hear "left foot, right foot, left foot right foot, c'mon you can do it, left foot...." And then I get to work, and I wish I could just tell the people here, no I'm not blonde, I'm not a ditz, I really am a smart girl, and I can really do well here, I'm just so effing tired! But no one here knows anything about my health, outside of the fact that it takes a long time to get to work. So I don't say anything, I just keep pushing myself to work harder and do better. So far, I don't think my evaluation will say "outstanding." But I think I am holding my own.
I remember when I was in college, and I was living with my boyfriend - now my husband - and my car broke down. I had no way to get to class everyday, so I was waiting for my father to come and pick me up from a half hour away, and then driving me another half hour to school. He was ALWAYS late. And I felt like the biggest asshole walking into class every after it was half over. One day I came in after everyone was leaving from a mid-term exam. I wanted to cry. My teacher, who was also my advisor, let me take the test, and when I was done, he and I were the only ones still on the room. He told me, very lovingly, that because of the fact that I was a woman, AND an African American, I was never going to be able to succeed in life giving as much effort as others might. I would always have to do more than every one else, just to get to where every one else was. And I thought, if he only knew what I had to go through, just to get to class every day, its not even close to what even other black women have to do. But I think from that point I realized, that no matter what my obstacles were, they could not be an excuse to not be where I wanted to be. I had to work as hard as I needed to, no matter how hard that was, and being "sick" or tired, or living far, or being broke could not be a reason to not be the best, or try to be the best. You get a promotion for doing good work, not because people feel sorry for you. So maybe its a good attitude, or maybe its a bad attitude, "but in the end, it doesn't even matter," to quote one of my favorite songs.
So anyway, I say ALL of that to say, that usually during the train ride, I sleep my ass off. I'm talking coma, neck breaking, mouth open, sci fi dreaming, dead to the world sleep. And today, I didn't sleep a wink. My period is officially late.
"Where do you live?" I inevitably get asked every day. "Do you know where Woodbury Commons is?" I say. Usually people in NY have heard of this enormous shopping outlet. "Well I'm about 40 minutes north of there." That usually incites the reaction, expletives, reprimands, and the "are you crazy??"s. Its funny, because people flip out every time, and its entertaining. The truth is, it DOES suck getting up so early, and having such a long day. I leave at 6 am and usually get back home at about 9 pm. But the thing is, to me it doesn't suck any more than working, period. I like working, I like having a job, and I like having a real job with real benefits where they don't write you up for not wearing a uniform, or certain color shoes. I like it that I'm at work right now, and I'm sitting here blogging. Yes its a long ass commute, but it beats the hell out of sitting at home doing nothing, or working at Olive Garden.
The trouble is that the fatigue that comes along with low kidney function makes things really tough. Sometimes I have to pep talk myself into getting off the train after the two hour ride. Most of the time, I just want to sit there. And if you could hear my mind speaking during the 10-12 block walk, you would hear "left foot, right foot, left foot right foot, c'mon you can do it, left foot...." And then I get to work, and I wish I could just tell the people here, no I'm not blonde, I'm not a ditz, I really am a smart girl, and I can really do well here, I'm just so effing tired! But no one here knows anything about my health, outside of the fact that it takes a long time to get to work. So I don't say anything, I just keep pushing myself to work harder and do better. So far, I don't think my evaluation will say "outstanding." But I think I am holding my own.
I remember when I was in college, and I was living with my boyfriend - now my husband - and my car broke down. I had no way to get to class everyday, so I was waiting for my father to come and pick me up from a half hour away, and then driving me another half hour to school. He was ALWAYS late. And I felt like the biggest asshole walking into class every after it was half over. One day I came in after everyone was leaving from a mid-term exam. I wanted to cry. My teacher, who was also my advisor, let me take the test, and when I was done, he and I were the only ones still on the room. He told me, very lovingly, that because of the fact that I was a woman, AND an African American, I was never going to be able to succeed in life giving as much effort as others might. I would always have to do more than every one else, just to get to where every one else was. And I thought, if he only knew what I had to go through, just to get to class every day, its not even close to what even other black women have to do. But I think from that point I realized, that no matter what my obstacles were, they could not be an excuse to not be where I wanted to be. I had to work as hard as I needed to, no matter how hard that was, and being "sick" or tired, or living far, or being broke could not be a reason to not be the best, or try to be the best. You get a promotion for doing good work, not because people feel sorry for you. So maybe its a good attitude, or maybe its a bad attitude, "but in the end, it doesn't even matter," to quote one of my favorite songs.
So anyway, I say ALL of that to say, that usually during the train ride, I sleep my ass off. I'm talking coma, neck breaking, mouth open, sci fi dreaming, dead to the world sleep. And today, I didn't sleep a wink. My period is officially late.
Thursday, July 19, 2007
I know, I know
I already took two tests, now I'm just waiting for my period. I think its due tomorrow. So we'll see what happens.
I'm feeling a little better than I've been feeling all week. I was just so tired and frustrated. Sick of being sick. You have to see, I look a mess. People tell me I look fine, but I feel like I look a mess. I'm so paranoid about all the little things lately, especially after finding that my shit is getting worse. And then I find myself wondering, is this a symptom of ckd? And scouring the internet for answers, when dammit, I'm supposed to be working! I'm a woman obsessesed ya'll! But you have to see, my hair is everywhere. It just crumbles when I comb it, and I don't have nappy, or dry hair. But its just breaking off like crazy! I read some where that your hair is made of protein, and with my proteinuria, I'm wondering if that is the reason why my hair is breaking off so much.
My face is breaking out too, those giant, deep pimples that look like mosquito bites. My husband was saying it my be the procardia that the doctor put me on, because he said he's never seen my skin get like this before. Procardia is a bp regulating medicine that is pregnancy safe, its new for me, so maybe i'm reacting to it. I have to be on something, I stopped taking my bp medicine, and in less than a week, I was up to 155/110. Bananas.
So anyway, I know its pre-mature, but maybe I won't get my period tomorrow. Maybe I will, maybe I'm not even ready for a kid. In the meantime, even though I'm painfully tired today, I'm not as beat as I was yesterday. I'll be going back to my body watching, inspecting my ankles for excessive swelling (they're already puffy, and its not going away), and being paranoid about other parts like my back, and my neck and my cheeks, which are hopefully just getting fat. But most likely not, I'm one skinny bitch.
When I had my biopsy last year, my doctor and the techs were all marveling at how muscular my back is. I don't know why, I guess because I've burned through all of my body fat, but my arms and my back almost look like a man. I'm a lean ass machine. We'll see how long that lasts.
I'm feeling a little better than I've been feeling all week. I was just so tired and frustrated. Sick of being sick. You have to see, I look a mess. People tell me I look fine, but I feel like I look a mess. I'm so paranoid about all the little things lately, especially after finding that my shit is getting worse. And then I find myself wondering, is this a symptom of ckd? And scouring the internet for answers, when dammit, I'm supposed to be working! I'm a woman obsessesed ya'll! But you have to see, my hair is everywhere. It just crumbles when I comb it, and I don't have nappy, or dry hair. But its just breaking off like crazy! I read some where that your hair is made of protein, and with my proteinuria, I'm wondering if that is the reason why my hair is breaking off so much.
My face is breaking out too, those giant, deep pimples that look like mosquito bites. My husband was saying it my be the procardia that the doctor put me on, because he said he's never seen my skin get like this before. Procardia is a bp regulating medicine that is pregnancy safe, its new for me, so maybe i'm reacting to it. I have to be on something, I stopped taking my bp medicine, and in less than a week, I was up to 155/110. Bananas.
So anyway, I know its pre-mature, but maybe I won't get my period tomorrow. Maybe I will, maybe I'm not even ready for a kid. In the meantime, even though I'm painfully tired today, I'm not as beat as I was yesterday. I'll be going back to my body watching, inspecting my ankles for excessive swelling (they're already puffy, and its not going away), and being paranoid about other parts like my back, and my neck and my cheeks, which are hopefully just getting fat. But most likely not, I'm one skinny bitch.
When I had my biopsy last year, my doctor and the techs were all marveling at how muscular my back is. I don't know why, I guess because I've burned through all of my body fat, but my arms and my back almost look like a man. I'm a lean ass machine. We'll see how long that lasts.
Wednesday, July 18, 2007
Enough Already
So now we are trying, and I have the distinct pleasure of experiencing all of the cliche emotions of a woman who is unable to conceive. I'm so sick of hearing the girl that I share a cube with talk to me about her son. I know it sounds mean, but whats the point of a blog if not to be brutally honest? She's really nice, and her son seems really cute, but I suppose being the cube-mate that I should be the one who is privvy to the excruciating details of all the firsts of parenthood. I hear a lot of things, but for some reason her stories are blow to the gut every time.
"We went on vacation so he got to sleep in the bed with me, and he loves to sleep with Mommy because then he can cuddle with me. And he lays with his face right in front of mine and says 'I love you mommy, good night mommy."
It's like a joke, but I have to sit and smile, and cock my head to side and say, "ooohhh that is soooo cute!" The entire time my gut is wrenching. What a remarkable feeling to want something so badly. It's almost unreasonable, but you can't deny that feverish desire is there.
We tried for the first time last week, but apparently nothing happened. Over a year ago, on a whim, I was just like, hey lets give it a shot. It took one time, and that was it, I was pregnant. But it turned out to be an unviable pregnancy, and I completely lost it in 10 weeks. Now, it looks like it won't be so simple, but hopefully it will happen soon. My OB GYN said that based on my test results, since my creatinine went from 2.1 to 3.1 in a year, that I would have a harder time conceiving than I did before. And even more so the longer I wait. I think I have an automatic defense mechanism to news like this, which is the assumption that my doctor doesn't know what she's talking about. Like she doesn't know that I have special angels watching over me, so in spite of my test results, what applies to most people does not apply to me.
I'm told that there is no chance, IF I got pregnant, that I would have a normal pregnancy. Right off the bat, I will have to deal with hypertension, swelling, a strict diet, and probably a lot of scares. These present serious risks to the fetus, including development issues, growth problems, premature birth, or death. As for me, they are about 95% positive that I will have severe renal decline during the pregnancy and will need to go on dialysis immediately after.
My thing is that I can suffer, I can deal with the dialysis, the fatigue ,the diet, the swelling, the hospital stays, the bed rest, as long as I can get one little baby out of all of it. My own little baby that has my husbands lips and my eyebrows. And who laughs like me, or frowns like him. My plan is that I will endure all of it, get a transplant, and live happily with my new family. But the hard part is waiting. I just want something to happen.
I'm 26 years old, and I'm so pre-occupied with everything, that I can barely do anything. I'm so tired that I find myself counting my steps. And whenever I say "I'm tired," and someone else says "yeah, me too" I just want to be like," Man, listen, you don't even know!"
"We went on vacation so he got to sleep in the bed with me, and he loves to sleep with Mommy because then he can cuddle with me. And he lays with his face right in front of mine and says 'I love you mommy, good night mommy."
It's like a joke, but I have to sit and smile, and cock my head to side and say, "ooohhh that is soooo cute!" The entire time my gut is wrenching. What a remarkable feeling to want something so badly. It's almost unreasonable, but you can't deny that feverish desire is there.
We tried for the first time last week, but apparently nothing happened. Over a year ago, on a whim, I was just like, hey lets give it a shot. It took one time, and that was it, I was pregnant. But it turned out to be an unviable pregnancy, and I completely lost it in 10 weeks. Now, it looks like it won't be so simple, but hopefully it will happen soon. My OB GYN said that based on my test results, since my creatinine went from 2.1 to 3.1 in a year, that I would have a harder time conceiving than I did before. And even more so the longer I wait. I think I have an automatic defense mechanism to news like this, which is the assumption that my doctor doesn't know what she's talking about. Like she doesn't know that I have special angels watching over me, so in spite of my test results, what applies to most people does not apply to me.
I'm told that there is no chance, IF I got pregnant, that I would have a normal pregnancy. Right off the bat, I will have to deal with hypertension, swelling, a strict diet, and probably a lot of scares. These present serious risks to the fetus, including development issues, growth problems, premature birth, or death. As for me, they are about 95% positive that I will have severe renal decline during the pregnancy and will need to go on dialysis immediately after.
My thing is that I can suffer, I can deal with the dialysis, the fatigue ,the diet, the swelling, the hospital stays, the bed rest, as long as I can get one little baby out of all of it. My own little baby that has my husbands lips and my eyebrows. And who laughs like me, or frowns like him. My plan is that I will endure all of it, get a transplant, and live happily with my new family. But the hard part is waiting. I just want something to happen.
I'm 26 years old, and I'm so pre-occupied with everything, that I can barely do anything. I'm so tired that I find myself counting my steps. And whenever I say "I'm tired," and someone else says "yeah, me too" I just want to be like," Man, listen, you don't even know!"
Tuesday, July 3, 2007
As of today
I've been scouring the internet for days trying to find someone who has a similar story to mine, so that I can see how things turned out for them. And in all this time, I've come up with zero results. Hundreds of sites that repeat the same things that I already know, the very things that I have repeated to my family and friends in my effort to explain the situation in an unalarming, yet comprehensive way.
"For people with chronic kidney disease, pregnancy is emphatically discouraged."
I'm 26 years old, and I've been married for four years. I have an exciting, average life. This means that my daily life consists of getting up, going to work, and generally doing everything I can to secure a comfortable future. I don't think I'm there yet. I've been through school, and after a long time being unemployed, I finally have a great job, and just finally starting to see the horizon on struggling financially. Its still a long way off, but at least I can finally see it now. My husband is my angel, he takes care of me, he comforts me, he loves me, he drives me crazy. We have had so many dreams and disappointments and hopes and all those good things that young American couples face. But, with me, crazy things happen to me - all the time. On a regular day, I might get my arm caught in the elevator, knocked down by a bus, find a roach in my hair, and/or have my train run over a person. I have a crazy and average life.
A little over a year ago, I was told that I had some type of kidney disease. It took about four doctors to be able to nail it down and figure it out, but I finally had a biopsy and learned that my kidneys were functioning at about 20%. In the sample taken I had an impressive 63 glumeruli, and of those, 47 were completely dead, 13 were partially functioning, and only 3 were actually functioning at 100%. 3 out of 63 is pretty damn sucky, but the blow to the gut was the adamant warning from my doctor that I would not be able to sustain a successful pregnancy. I already miscarried once, but I've decided that I want to try and bring a baby into my family. As of today, this is the tough decision that I am facing.
"For people with chronic kidney disease, pregnancy is emphatically discouraged."
I'm 26 years old, and I've been married for four years. I have an exciting, average life. This means that my daily life consists of getting up, going to work, and generally doing everything I can to secure a comfortable future. I don't think I'm there yet. I've been through school, and after a long time being unemployed, I finally have a great job, and just finally starting to see the horizon on struggling financially. Its still a long way off, but at least I can finally see it now. My husband is my angel, he takes care of me, he comforts me, he loves me, he drives me crazy. We have had so many dreams and disappointments and hopes and all those good things that young American couples face. But, with me, crazy things happen to me - all the time. On a regular day, I might get my arm caught in the elevator, knocked down by a bus, find a roach in my hair, and/or have my train run over a person. I have a crazy and average life.
A little over a year ago, I was told that I had some type of kidney disease. It took about four doctors to be able to nail it down and figure it out, but I finally had a biopsy and learned that my kidneys were functioning at about 20%. In the sample taken I had an impressive 63 glumeruli, and of those, 47 were completely dead, 13 were partially functioning, and only 3 were actually functioning at 100%. 3 out of 63 is pretty damn sucky, but the blow to the gut was the adamant warning from my doctor that I would not be able to sustain a successful pregnancy. I already miscarried once, but I've decided that I want to try and bring a baby into my family. As of today, this is the tough decision that I am facing.
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