What am I doing?!

There are times in life when we wonder how and why we have come to a certain point, why certain people are in our lives, and how all of these elements will come together in the controlled chaos that is life. I am at one of those junctions in my life.

I know that people travel in and out of our lives, leaving their marks in some form or another. Most of the people that were moving through my life made me distrustful and cautious. I have met people who decided that my well being was not important and wanted to use me for various reasons. I met one man who told me that he just wanted to sleep with me because he had a significant other and knew that I would not want to be in a relationship as a result of dialysis. And I admit that I used dialysis as a crutch to drive people away, and most people allowed me to do that. It just so happened that I met a wonderful gentleman who put many things about my life into perspective... well, a better perspective. My family has helped me to shape many positive perceptions about my life and being on dialysis. He just let me know that there is no reason to be afraid to open up and get to know other people, that I had no right to assume that people would react in a certain manner because I am a dialysis patient, that I should at least harbor some trust in the opposite sex. In the short time that I have known both he and his son, they have helped to transform me into a being who enjoys life, trusts others, and gives her last to help others. I have always been a giving and caring person, but because of past relationships I have managed to lock that part of myself away in the smallest, most guarded area. For awhile, I misplaced the key. I refused to trust people, refused to even take the chance to get to know new people. I had become hard and cold as steel. No one was getting in and I was not letting my feelings out. I had bescome a real life Pandora's box, the only difference being that releasing the contents of the box would only cause major destruction to my own world. So I kept the key and the contents of the box locked and hidden. Then along comes this man and his kid and they, together have managed to create deep, long cracks in the exterior of the steel box (yes, I know steel does not crack, it is a metaphor people!). There is a part of my being shining through the cracks, radiant and ready. The light is warm and soothing for all of us. I have not felt my own inner warmth and radiance in a while. And it feels good, being happy and nice, loving and caring, wanted and wanting, living and being.

It seems that the fire-hot chaos that had become my life is beginning to settle down a little. it still burns, white-hot, but it has managed to create a uniform figure, it has learned to depend on itself, to bring its arms close and hug its own being. The chaos of my life is more organized. It burns brighter as it closes in on itself, but it keeps me warm and alert as it moves through its realm of darknes. I need the chaos that is my life to fulfill the dreams that I see. It lights my way as I move through the darkness, illuminating it. The chaos and the control push and pull against one another, taking and giving energy. This is exchange of energy is helping me to create a new being. It is wondeful and reassuring. Each day I open my eyes, my breath comes easier, I see cleared, the world seems colorful and bright, like this exact moment is where I am meant to be, nowhere else. This is my place... chaotic or calm, tumultuous or mundane... everything has its place and purpose... and maybe I am where I need to be...

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Something soft and gentle

I woke up the other morning, expecting the gray, dreary sharpness that had become my life. Instead of waking up to bleak and dreary grayness and sharp edges, I woke up to soft, light colors, softness and gentleness. I felt at peace with everything around me, as if all things had a purpose at this exact point in my life. I wanted to caress everything that was soft and gentle about this new life, to kiss it, sing to it, smell it, love it, savor it with every sense that I have. It is warm and creamy, and slightly sweet, this gentleness. I feel like I can taste it each morning I wake up, with each thing that I do, every step that I take. It is wonderful. It wraps me in a warmth that I have not felt for a long time. It makes me feel safe, and alive, and wanted. I want to go out and play each morning I wake up, to pick up the soft colors, revel in the sweet smell, to frolick among the vivid brightness, the creaminess; breathing in the aroma of the newness. This new life is gorgeous, beautiful and enchanting. I can't wait to continue exploring the softness and gentleness of this new life.

I have an inherent belief that people come into our lives for a reason, whether they are just passing through or whether they will have a greater impact. I am about to seriously jinx myself here, but here goes! I met a really wonderful person. I believe that he is in my life to let me know that, even though I am on dialysis and am going through many things associated with the process of getting a transplant, I am normal. I am human. He lets me know that I need love and affection just as the next person. He makes me feel normal, which I have not felt in a while. He lets me know that it is ok to shelter myself at times, but that I must, ultimately, unlock the door and let someone in. He lets me know that things will, somehow, work out, no matter what. Even though I have not known him long and do not know how long I will have the pleasure of having him in my life, he brings something to my life that is refreshing. Maybe that's all I needed, was something fresh, something that does not revolve around dialysis and kidney failure. And he is part of the reason that I woke up to that bright, fresh, softness. I must admit that I love it! Even if nothing comes of the relationship/friendship with him, I know that I will always wake up to brilliant softness and vibrant color from now on!

Musings...

My friends are off the chain! That's all I have to say about that!

I was talking to my mom the other day and she told me to suck it up (life and the anxiety over getting a transplant), get over it and do what the hell I have to do!

I was listening to the radio the other day and a song about being in love with a stripper came on... how in the hell do you fall in love with a stripper? ... I guess strippers need love too...

Why can't you have your cake and eat it too? You're supposed to eat it! That's the purpose of cake! (I have never understood that expression!)

Why is my social worker (at my dialysis center) an idiot?

Why aren't there any black people on Nanny 911?

Why is the majority of the patients at my dialysis center mostly black?

Am I really "mean" when it comes to the opposite sex? I'm overly cautious, but I don't think I'm mean!

When will I have sex again?

Why do crazy men hit on me? Why do old men hit on me? On most days I look at least sixteen, does that mean they have pedophilic tendencies (or maybe they're just perverts) because I look young? Does that scare anyone else?!

Why do people at dialysis ask my opinion on things that I don't know about, like losing weight, going back to school after 20 years, how to talk to their wives/husbands? I have never been more that 115 pounds, I've gone to school continuously, and never been married! Go figure.

Will I do well enough on the GRE to get into Boston University or even Harvard?

Am I shooting for the moon? If I miss will I land among the stars? Isn't the moon closer to the earth than some stars? So wouldn't I have a better chance of actually hitting the moon?

Do the anecdotal stories from Sex and the City apply to black and Hispanic women? ( We do deal with a different breed of men, but then again, a man is a man!)

How many women do we know who are actually like the women from Sex and the City? Has that ruined our realistic expectations of relationships? Will the man we love fly to Paris to bring us home?

Will I ever gain enough weight to actually get my transplant?

Will I ever find "the one"? How will I know he is "the one"? And will I want to marry him?

Will I ever finish the book that I started writing? Will anyone want to read it?

Will I ever have kids of my own? Will they act like me?

Should I move to Spain after getting my MA and PhD to teach?

Will I do all of the things I dream of in life?

Where is my inner diva? Will she ever surface?

What are we doing with our lives?

How will I help the next person? Will I become an advocate for local kidney patients? Can I even see myself doing something like that? How will you pay it forward?

La Familia!

Family... can't live with it, can't live without it. My family. I love the members of my family... Lord knows I do, but I can't stand some of them. I can't stand the fact that two of my cousins take advantage of my grandmother and she allows them to. I can't stand the fact that they have kids but leave them with other members of my family for days at a time. That really burns me up because they have had the blessings to have children, and here I am having doctors telling me that any potential pregnancy could possibly harm me. That's love for you I guess. I can't imagine (nor will I try for fear that my mother will slap the taste out of my mouth) treating her in such a disrespectful and degrading manner. I am 26 and I still fear my mother (and my grandmother, but I fear my mom more). But I also love the fact that we have a stronger relationship than a lot of my cousins and their mothers. I thank her often for just being my mother, for rearing me the way that she did, for helping me to become a better person. I enjoy the fact that I am very close to each of my siblings, and though I've had some issues in the past with my dad, we are on the right track now.

I don't think that my cousins believe in forgiveness and second chances. I wonder if my granny knows that she really doesn't have to take their crap? I wonder if she cares, if she feels that it is her duty to care for her daughter's children because of her own mistakes, or if she feels that her granddaughters at least stood a better chance through her intervention?

I am confounded! My mom sat me down in high school and told me that if I did get pregnant, that we would handle the situation accordingly. That scared the hell out of me (can you see a pattern! I am a bit of a sissy!), so I remained a virgin until I was in college. There were too many things that I wanted to do with my life, too many adventures waiting for me! I don't guess my cousins got the talk about the "family curse." I think the curse is that the women in my family are extremely fertile... I can't see have a child, even if unwanted, a curse. My mom jokes about the family curse to this day. I have yet to determine the truth behind it personally. I have always protected myself to the point of overprotection (I told you I am a chicken). There is no way that I would want to burden anyone in my family because I made a mistake. I want to have close relationships to my children. I want to know that the only reason I would have to call my mom is to ask for advice. I don't want to put my kids off on her (like I said earlier, she'd hurt me anyway). I want her to volunteer to help me with my child. I don't want her to feel it is her duty. I want her to enjoy being a grandparent. I don't want her to have to raise her grandchild after she has raised her own. I'm sure that's how my granny feels some days... but she lets it go on. I often wonder what will happen when/if something happens to my grandmother. Will they be able to survive without her? Who knows! But life is life, and family is family. We all make our decisions and we must live with them, no matter what!

Ahh... Family! Gotta LOVE them! (And I do... I REALLY DO!!!!!!!!!!!!!!)

To transplant or not to transplant...

The nurse from the transplant clinic called today. My team (each transplant person has a team of nurses, doctors, financial planners, technicians, and a social worker, among others, assigned to him/her from the onset of the process. That team is with you from the beginning of the process to the actual transplantation process and afterwarsds) wants me to come in for more testing, which means that I am, essentially, going to poked, prodded, picked, and pricked. The last time I went in for testing, I had to give over ten vials of blood to the lab. By the end of the testing session, I was dizzy and sick.

Most people in my position would be ecstatic that the transplantation process is no longer on hold. They can see the good that will come from being filled with dyes, given stress tests, having electro-cardiograms probes stuck to their chest. Yes, I can see the good, I can also see what others may not. I see the fact that maybe all of this may not go as well as hoped, that the organ donated may not be a suitable match and will reject itself, the repercussions of missing a dose of medications because my life would essentially depend on keeping up with the correct dosages at the correct time, the possibility of having to return to dialysis as a result of the kidney failing, the many complications that come with the operation itself, and now the complications that come with having hep C and possibly needing another transplant in a short period after the first one. All of this weighs heavy on me. I want to do what's best for me. I want to be happy and healthy, but I know I will never be as healthy as I need to be. The things that most women dream of come secondary to me. Instead of planning for the future, I have to think about the present. I have to think of insurmountable medical bills, the possibility that I will not live to see my friends get married, or watch their children grow up, the possibility of never having children of my own or even getting married. I wake up and wonder if I will be around the next week, the next month. If there is another glitch in my body waiting to erupt. There is an intense and crushing pain that comes in not knowing how your life will turn out: whether you will be around to see your little sister graduate from college or see your brother marry his high school sweetheart; whether you will be around to see your friends' children learn, grow, and mature as they go through the motions of life; whether you will have to watch your parents faces as they attempt to let you go. Most people don't think twie about the occurrences in their lives. They somehow know that they will be around for the next fifty, sixty, seventy years. They will live their lives, taking the smallest things for granted. They will never have to wake up to the black calmness of the night and wonder how they will make it through the next few months. They do not lie in bed listening to crickets and birds chirp in the moonlight, wondering how many more times that sound will fall upon their ears. They don't lie in bed, taking in the sounds of the night, the cars passing by, the wind blowing, the trees scratching against window panes, the light buzz of electricity, the pale yellow glow of synthetic light from streetlights, insects and other creatures, listening so that life doesn't all of a sudden slip away. Most people take life for granted, and here I am, trying to savor every moment, not wanting it to slip away.

Tiredness weighs my body down after dialysis, and on those days my mind literally screams out that a transplant is the way to go. But then I think about the many people at my center who have had transplants but have ended up, once again, stuck to a machine. I don't think I can handle the prospect of not knowing whether or not the organ that I am given will work inside of me. If I go through another surgery, I want it to be bonafide. I want no questions to linger. I want to know that everything will turn out well, that I can move on with my life... that all of this will become a distant memory. I don't want the cloud of dialysis looming over my life after the transplant. I don't want to look at my arm every day and be reminded that there is a twelve inch piece of mesh plastic there. I don't want to go through the process of losing another organ. Hell, I have essentially lost two already! Isn't that enough! I don't want to lose someone else's too. I just want to be normal... in every sense of the word. Too bad I don't know what normal is. I have, essentially, been sick for the past 23-25 years of my life, with both hep C and high blood pressure. The kidney failure is the result of my stupid assed pediatricians and their misdiagnoses (there were several from the hep C, which was not discovered until last year, and the high blood pressure, also not discovered until last year. My blood pressure stabilized except under stress, mine's was above normal elevation ranges. The doctors told my parents that my frequent nose bleeds and headaches were a result of sickle cell trait, which has no symptoms!). Damn the eighties and not testing blood for viruses!

I would give anything to wake up and not have to worry, to not have to make a major decision regarding my health, to be normal and carefree as many people my age are. But, alas, I will never be normal. I will always have to wake up and worry, I will always have to make major decision about my health... I will never be normal, in the sense of being carefree. Well, I have to make the call to the transplant clinic. I figure I may as well complete the testing. I have a while yet to make up my mind! I just hope that I make the right decision...

Birthday Fun

My birthday was Sunday, so my sister and I decided that we would have a little get together with a few friends and play games... you know... scrabble, scatergories, taboo... things like that. It sounded like a great idea to me. I love any opportunity to act like a little kid! But things took on a bit of a different twist when my sister and two of my cousins got together and decided that they wanted to go to a club after game night. I knew then that the night would be a disaster. I am not really one to go to clubs (especially ones that have an overabundance of young boys who have just gotten out of their teens and think that all women want them even though they cannot make coherent, correct sentences, no jobs, no goals in life, and think it's acceptable to take everything (financially and emotionally) from women that they are involved with (i don't consider it dating because they don't spend enough time getting to know the woman... only enough time to sleep with her). I just wanted to have fun. I even had a nice outfilt with cute (yet comfortable) shoes.

A few friends came by for game night, but my sister and cousin's started getting upset because we actaully started playing games! I thought the whole point of game night was to sit around and play games with friends and family. Needless to say, the night was not one that was for me... it turned into a night for my sister, cousins, and their friends. I decided, while playing scrabble with a good friend, that I was not going out with them But he managed to talk me into going. What did we do that for? We went downtown and it was fairly chilly out. The club they wanted to go to was charging a little more than we expected, so they decided they wanted to walk around and see what else was available. I can do that when it's warm outside, but not when it's cold. I became increasingly irritated because they did not want to go into a club that had an ecletic mix of people (black, white, hispanic, asian). They basically wanted to go to a club that played hip hop. After they said that, I decided that I (and my friend) was going to Jillian's to play games. So we ditched them. It was probably the best decision! He and I played simulation games and had a light snack... did a lot of catching up. It turned out to be a pretty cool night. After Jillian's closed we went back to my place and palyed games until four in the morning. I had a lot of fun... then again, I always have a lot of fun with him.

He is a wonderful person. We've known one another for a while. Sometimes I wonder if he is my missed opportunity. We talk about any and everything. I can be myself. He can be himself. He is nonjugdmental. And I am the same with him. He accepts my somewhat eccentric tastes in music and movies... my love of most things Spanish and Latin American (food, music, culture, etc), my love of good movies (Syriana, Good Night and Good Luck, etc), and my guilty pleasure of the new age/mystic Karate/Kung Fu movies (The House of Flying Daggers, Crouching Tiger, Hidden Dragon, Hero). He likes my look (wild, curly, natural hair) and the fact that I really don't keep up with fashion trends (I like a classic, clean look reminiscent of the 40's with nice straight lines and vivid colors). Basically he accepts the quirky person that I am. Yes, I have a couple of male friends who are the exact same way, but they are married and I never really thought of taking it to the next level, and I haven't really thought about it with C (we'll call the other two who are married A & B). But I can't help but wonder if I will ever meet a guy who will respect and accept me in ways that A, B, & C have. Maybe I'm just a little overdramatic because I have celebrated yet another birthday and I feel like time is slipping away. Just kind of made me think about things... how they're going... where they'll end... how I'll get there.

For my actual birthday, my mom, sisters, and cousin went to play laser tag and ride go karts. It was great (as I said, I am a sucker for anything that involves me acting in a child-like manner)! I loved the wind whipping though my hair while I was riding the go karts. And laser tag was great because it was to strategic and fun. This was one of the best days I have had in a while! No worries. No thinking about dialysis. No thinking about what I could or couldn't eat. NO getting sick from the foods that I did eat (I only ate a little). No getting too tired after palying for most of the day. No sleepiness. No irritability. It was a perfect day... even though it rained.

On the way home, my mom told me that she could see the fighter in me... that I was becoming more and more of a fighter as a result of dealing with dialysis. I don't really see it. I think I am doing what it takes to survive... to keep myself as healthy as I can, to voice my concerns when things have an adverse affect on me, to get the things that I need when I need them, to deal with the stubborness and stupidity of other people, to take myself to another level when I need to. I think all of these things must be done in order to make it day by day, week by week, month by month. It's been approximately one year since I was diagnosed with kidney failure. In that year I have gone through a roller coaster ride of pain, suffering, healing, and dealing. I have also been doing things that I have always wanted to do, like writing (hence the blog) and entering writing contests. My mom and dad tell me often that this is my time to be still. And I am still. I am still here. I am still fighting. I am still learning. I am still living. I am still coping. I am still being. I am still me!

Parched...

Today is a dialysis day. I got up at 4 (I was a little late, was supposed to get up at 3:30!). At 4 my ride was outside, so I had to get dressed quickly. It's amazing what a girl can do with a five minute window! Anyway, the State of Tennessee pays a company to transport me to and from dialysis. It's convenient because my blood pressure drops easily and I'd probably have a wreck or something! I ride with two elderly gentlemen. They go to different centers. Today Mr. Ward metioned that he had gained too much fluid since Monday. He said that he had gained about 7 kilos (which approximates to about 14 and a half pounds)! I was amazed that he would allow himself to do that. And I could hear the fluid in lungs. His breathing was labored and heavy. I looked at his face and could tell that he was bloated as a result of the weight gain. (Sometimes you can even hear the rattling of the fluid around the lungs.) But he talked about his weight gain as if it were some type of honor! I don't think he realizes that he is basically drowning himself with the liquid that he is ingesting. He only made it worse when he asked the driver to stop at The Waffle House for breakfast (I must admit that I was a little excited about breakfast though!). So we had breakfast at 4:15 this morning. And I admit that I cheated because I had a BLT (shouldn't really be eating bacon and tomatoes, too much sodium and potassium). But he knew that he had already surpassed the acceptable amount of fluid gain between treatments and he drank more liquids and had a grilled cheese (shouldn't be eating cheese, too much phosphorous) as if none of it mattered.

I get upset at myself when I gain more than two kilos (about four and a half pounds) between treatments. It doesn't happen often, but when it does I can feel it! I get sluggish and dizzy. I have this weird ringing in my ears, it seems to increase when I close my eyes. When I lay down my chest feels so heavy and it hurts to breathe. I have to lay on my side because I feel like I am drowning. My throat becomes restricted and my acid reflux gets worse. And my eyelids turn a deep purple (from all of the toxic buildup in the bloodstream) On those days I am more than happy to for a technician or a nurse to stick me. In fact I welcome it because I know that at the end of the three hour period I will feel more than a hundred percent better. Mr. Ward told me that seven kilos is his normal weight gain between treatments. Our treatments are only a day and a half apart (Monday, Wednesday, Friday for some; Tuesday, Thursday, Saturday for others), except on weekends when we get a full two day break! On weekend the acceptable weight gain increases to somewhere between four and six kilos, depending on your physician. That amazed me. I wondered what his dry weight was (the weight of a dialysis patient after having their blood cleaned. Most people begin to cramp really bad when the machine pulls them equal to or below their dry weight). Then I imagined what it would feel like to walk around with an extra fourteen pounds of fluid on. I am only 102 pounds. That would make me 116 pounds! Hell, I would look good! I'b be sick as hell, but I would look like I did in college! I would be able to fit all of the clothes in my closet! I wouldn't have to shop at specialty stores for my clothes. I wouldn't have to go to the juniors sections when I shop! But I would be sick... my heart would be screaming and I know that my body wouldn't cooperate with me in any shape, form, or fashion. Looking good isn't all it's cracked up to be! I'd much rather be healthy!

In order for the dialysis process to clean your blood properly you have to control your intake of sodium, potassium, and phosphorous. We also have a high protein diet because our kidneys cannot process the protein and it either leaves the body through urination (for those who still have that function) or goes directly into the blood stream, increasing the toxins in the bloodstream (that's why a lot of dialysis patients have dark circles around their eyes, cheeks, and mouth). Knowing that, I try to gain as little weight as possible. I eat fairly healthy (when I am not cheating), and I get out and exercise. I try to follow my doctor's advice as strictly as possible (that way when I do cheat, it isn't as harmful, notice I said as!) I digress... mostly the liquids that we intake (any beverage, broths from fruit, ice, jell-o, and anything else that melts at room temperature) are taken into the bloodstream. The more fluids you intake, the harder the heart has to work to pump blood to the rest of the body and it is forcing the toxins throughout the rest of the body. (As you can see my physicians did a wonderful job of scaring the hell out of me so that I would comply with my diet!) I think a lot of people are upset about the drastic changes (and believe me they are drastic) in their diet and lifestyle and rebel against the "regulations" that have been forced upon them. I was too, but I would much rather have a diet and a lifestyle that sucks than be a ticking time bomb (and that's what a lot of kidney patients are because we have underlying causes that led to the kidney failure such as high blood pressure, high cholesterol, and diabetes)! Dialysis makes you so thirsty though, and I can understand why Mr. Ward drinks so much liquid. You get off of the machine feeling dry and emaciated, like a cartoon character. Your skin draws tight and becomes wrinkly. Your mouth feels like cotton. Then you take that first sip of water and it feels great because you can, literally, feel it coursing through your body, rehydrating and regenerating your skin. It's easy to go overboard. I have to freeze whatever I take to dialysis so that I won't drink it all while I am at the center (that took a lot of discipline because I would get mad when there was no liquid). I only allow myself extra liquid if my blood pressure gets low. I don't know what to say about that old man. I think he's just set in his ways and dialysis isn't going to change his lifestyle. It changed mine... though I am still trying to figure if it's for the better.

I am still debating on whether or not I want to get a transplant. (to my friends who are reading this, I apologize! It's a hard decision!) I can't imagine having to take 10-30 pills everyday... steroids, anti-rejection medications, immuno-suppresants, etc. What if the kidney that I am donated is not the best possible match and it fails? What if I immediately reject it? What if the regimen for my Hep C (liver) compromises the kidney after the transplant? What if the kidney stops in the midst of the transplantation? What if my donor reneges on the deal? At least with dialysis I know what to expect and how to handle most aspects of the treatment accordingly. But then again with the transplant I get the eat whatever I want. I miss oranges, mangoes, papaya, greens, orange juice, watermelon, tomatoes, peaches, beans (any kind), deli meats, cheese, ice cream, milk, potatoes (that I don't have to soak for four hours), salsa, mexican food, lasagna, pizza, Wendy's hamburgers and frosties... Wow, it seems a lot worse when I write out some of the things that I not supposed to eat! Too bad I cheated this morning... now I have a two week period to eat healthy! Ah well... se la vie.