YOU ARE NOT ALONE - A companion online community discussion board for The Mental Illness Happy Hour podcast with Paul Gilmartin

Not quite sure where to start. Suppose I should offer a bit of background. I am a 27 year old female and am currently on the transplant list waiting for a kidney. I was born 2lbs and 12 ounces, which automatically meant I had smaller kidney mass. This in and of itself didn't cause problems, but when I was 3 I got a really bad bladder infection that backed up into my kidneys and caused scaring. The doctors talked about doing a transplant then, but sometimes when an individuals kidneys are damaged at a young age the body can lean to adapt to the decreased function. So my doctors choose to take a "wait and see" approach. And overall, things worked fine. I suffered no ill effects, and my body seemed to be adapting. But, around my 23rd birthday, my function started to decline. They aren't really sure why. I think it was a combination of going away to college and not taking very good care of myself (you know, eating poorly, little sleep, staying up late, all the college things) and one of the medications I was on. Anyway, at 23 I was referred to a nephrologist (kidney doctor) and started seeing her every 6 months and having monthly blood work done to check my function and toxin level. About a year ago my function dropped to 20 percent. At 20 percent function you qualify to be put on the transplant list. So, it took about 3 months, and lots of tests to make sure I qualified, but I was added to the list.That was a huge relief. It is horribly nerve wracking knowing a panel of doctors holds your life in their hands, and that they can deny you for whatever reason they want. In my case, the chances were slim that they would because I was in good health, don't and never have used drugs and was young. But when you are going through that, every test causes anxiety. I kept thinking, "what if they find something wrong? Something no one has ever found before? And what if they decide I'm unfit for transplant? Dose that mean I'll have to be on dialysis my whole life? Or will I just die young?" I had nightmares about it constantly. I was just waiting for the random test results to show something negative. Thankfully, they didn't. But it was nerve-wracking to say the least. Anyhow, In my state the average wait for a kidney is 3 to 5 years. In some states it's longer, and others shorter. But you have to be a resident of that state to qualify, and becoming a resident can take anywhere from a year to two years, so I decided to stay where I am. Getting an organ isn't as easy as they make it out to be in the movies. It's a complicated process.
Now that I've established some back story I guess I just want to talk about my experience. There are so many things I want to say, but I'm not sure how much I'll be able to put into words coherently. Being 23 when it all went downhill changed a lot of things. And to make matters even more confusing, I was told that because of this condition I will never have kids. My kidneys won't support me and a baby, and after transplant the anti-rejection meds I'll have to take the rest of my life are...harmful to a fetus. I'd always joke about how children were devil spawn and never wanted any. But, at 23, no one knows what they want...a 23 year old isn't thinking about kids.They are thinking about finding themselves, and developing their life. But suddenly not having that option anymore...hurt. And it still hurts. Not as badly as it did then, but every now and then I'll get this..twinge. And suddenly, all I want to do is scream. Or cease to exist. Or remove everything about me that is female, so I won't be reminded of what I've lost. I didn't realize how deeply children were tied to my sexuality until that moment. I remember leaving the doctors office after that visit and feeling...shocked. Like...this isn't happening. It can't be happening. I'm 23! 23 for fucks sake! This doesn't happen to 23 year olds. And my mother was there with me in the appointment. I remember her asking me if I was ok. I wanted to break down. To sob. To ask her to hold me. She would have. But I didn't. I had to be strong. For her. I couldn't do that to her. She had been through so much with me already. And I just...I couldn't. And I was afraid. Afraid of her reaction and her grief. We've never really talked about kids. She's never pressured me for grandchildren. But I knew she had hopes for me. And in that moment I couldn't face her. I couldn't face myself. Funny, but I went straight from that appointment back to class.Tried desperately to act like everything was fine. And I thought I would get through the day alright, until my voice teacher asked me if everything was all right. Just in passing. Guess I wasn't hiding it as well as I thought. As much as I wanted to lie in that moment, I couldn't. Because nothing was alright and I felt like nothing would be all right ever again. So I said, "No," in a hoarse, desperate whisper. I think the tone of my voice scared him. I remember him looking at me with....was it concern? And he said, "Why don't we talk in my office." I went back to his office with him, blindly following, numb, dead, desperate. And I told him what the doctor said. I cried. I remember saying, "I don't know why this is happening!" He was compassionate. He did the best he could, offering me hope the best he could. But, I remember, in that moment, the hollowness I felt. The hole. The emptiness. Nothing he said really got through to me. How could it? He was a man. His body wasn't made for the purpose of giving life. He wasn't reminded every time he looked in a mirror that a part of him was gone. Missing. Unfulfilled. All I could think was...who would want me now? Who would want someone who was half a woman? All I could think was how terribly unfair it was. Sure, I never wanted kids. But I thought...if i met that special person, then maybe I would change my mind. Now that chance has been taken from me. Taken before I ever even got to chance to explore the idea. It seemed like such a terribly cruel joke. And it changed how I looked at life. It changed what I thought was important. It changed my attitude. I was still in college when this occurred, and I suddenly found it near impossible to connect with my peers. I couldn't listen to my room mates complain about boy problems, and suddenly found it hard to be sympathetic with them about the small aches and pains they suffered. I was angry. Pissed that I'd been dealt this shitty hand.And it didn't help that I felt so totally alone in this. When I tried to express my anxiety about my kidney problems, or the whole kid issue I got comments like, " you can always adopt" or "at least it's not cancer" or "my aunt had kidney stones once". And I understand those comments. What 20ish year old is equipped to deal with this stuff? Very few I know. They were doing the best they could to try and help. Saying things they thought would make me feel better. But it just made me feel worse. My last year of college was full of bitterness and isolation. I hated everyone around me. I'd grown tired of their platitudes. But I don't blame them for them. I realize I was seeking solace in the wrong places, and people do the best they can.
The problem with Kidney Disease is you don't feel the effects until your function is pretty low.It's sneaky like that. For the longest time in my 20's I was convinced my doctors were lying to me. I mean, I was fine! I felt fine. I was active, I had no problems.I was able to do anything my friends did and more. Sports, late nights, an besides, I was young. I thought I was invincible. Sure, my blood pressure was a little high( a result of the kidneys not filtering my blood properly) and I got headaches, but who didn't? And if I just ate healthier I could control my blood pressure, no problem! I was exercizing 3 times a week, hard core, lifting weights. They were wrong. I was sure of it. I didn't feel or see anything wrong. So I convinced myself that they were wrong. I now realize I was in denial. But, when you can't see or feel a problem, it's hard to believe there is one.
Now of course, I know differently. They don't put you on the transplant list for no reason. And I've started to notice things. I now feel the effects of my declining kidneys. I'm tired a lot. Exhaustion is a side effect. I suffer from weeks of almost crippling nausea because of the build up of toxins in my system. During those times I struggle to choke down a piece of bread and glass of juice for breakfast, and end up eating next to nothing the rest of the day. There are days where I run to the bathroom at work, and desperately try to hide the sound of my dry heaving. These episodes of nausea are spuratic and seem almost impossible to predict. They can last anywhere from a few days to 2 months. I've been ok for nearly a month now, but I never know when one will hit me. I have difficulty sleeping. I wake up a lot, usually because I have to pee every hour to two hours. Yet another result of kidneys not functioning properly. The thing that is causing me the most distress recently is the fact that about every 3 months I end up in the ER. My most recent visit was last saturday. My electrolytes were unbalanced and my potassium was low which caused me to pass out at work. I've learned to recognize the "pre pass out" feeling, and usually if I just sit down and eat something it will pass within 5 or 10 minutes. This time, it did not. And what scares me is that I couldn't communicate. I've always assumed that I'd be able to tell people what was wrong. I'd gone to the office to sit down, and I ended up laying on the floor, unable to move, unable to speak. Knowing I needed help, but being so tired that I couldn't make myself move. I forced myself to crawl to a door way, and call for help. But I must've not been loud enough. I could see people...a mere 10 feet away. Hear them talking. But I couldn't DO anything. Waiting for someone to notice was torture. It was like a nightmare. But it was happening in real life. And I thought... maybe I'm dying. Someone eventually noticed and called an ambulance. But it scares me. Being that weak and helpless. Never knowing when an episode of dizziness is going to turn into something horrible. And I just feel like I can't deal with it. I'm tired. I've really got no one to talk to about this. I don't want to worry my family, so most of the time I pretend like everything is fine. I put on a smile and convince them that I'm taking it all great and staying positive. But the truth is, I just don't want to do it anymore. I'm tired of being strong for everyone. Of following every sentence with, "but it's ok. I'm doing fine." Even though most of the time that is a bald faced lie. I'm tired of being weak, and hate myself for feeling so terribly overwhelmed. But at the same time, being strong is exhausting. I'd love to give in and complain about everything. Just talk about how much it sucks. But I feel like I'm being ungrateful and whiny. Feel like I need to suck it up and move on. Get over it. Because there are people out there with it so much worse. Sometimes I think I'm just lazy, and that this is all in my head. And I hate myself for being such a piece of shit that all I want to do when I get home from work is sleep. I tell myself that I've just got to push through. I've done it before. But I can't seem to make myself do it anymore. And what scares me is I'm starting not to care. About my health. And some days, about my life. I'm not saying I'm going to go do crack or kill myself. I'm just saying...I find myself coming home, and rather than dealing with things--rather than even making myself dinner, I crawl into bed and sleep for as long as possible. Because when I'm sleeping I'm not thinking. I'm not worrying. I'm not lonley, or alone. When I'm sleeping, I don't have to pretend that everything is alright. Its the only time I don't feel and think. And I hate myself for it. I'm 27. I'm a god damn adult and I should act like it. I should face my problems head on and conquer them. Not cower and hide from them like a child. But I just can't. And I hate myself for it. I just feel so terribly alone. So dreadfully alone and ashamed that I can't pull myself up. I don't know where to go from here. I don't know how to deal with this anymore. I can't do it on my own, but I feel like there is no one I can ask for help...

Hi, lawlessness45. That sounds like an intense burden. You seem really scared, and I would be too. That is a really shitty thing to deal with in so many ways, especially at a relatively young age.

I can relate to part of your struggle about kids, albeit indirectly since I'm a guy. I am at a point in my life where I fear never being able to have kids with my wife and I have also realized that is tied up in a big way with part of the expression of my sexuality as well. And I understand how the well meaning suggestions about adoption etc miss the point of what you're going through.

I'm a god damn adult and I should act like it. I should face my problems head on and conquer them. Not cower and hide from them like a child

Oh man, can I relate to that thought and the pain and shame it brings, and you know what? You ARE acting like an adult. A mature person knows that they have limits. Knows that they are not superhuman. Knows that the need to rest, withdraw, regroup, rue energize from time to time. Self care and comforting the scared and hurt inner child is not childish behavior. Be a good parent to yourself. Being an adult doesn't mean you can't have feelings, can't be scared. Be compassionate and patient with yourself. It sounds like the physical symptoms are really taking their toll and that contributes to the fatigue a lot as well as feeling depressed about it. You don't have to like feeling this way, but you can try to accept that this is how you feel right now and stop beating yourself up about it.

To me, you are not weak, or ungrateful, or whiny, or any of those things that you characterized yourself as. My God! You have a serious health issue that affects your life and your future! Of course you have feeling about that. Of course that affects how you function day to day, hour to hour. It would be crazy for it not to. We were obviously raised with similar messages - tough it out. Complaining means you are weak and a hinder. As long as someone else has it worse than you you have no business feeling bad about yourself. It's all bullshit. I've been trying to unlearn those teachings in my late 30s/early 40s. You've got a big head start on me. I am actually in awe of your strength and your resilience. It must have taken a lot of effort to post this, and I am really,really glad you did.

Hugs. Super big warm long-lasting mega hugs. You don't have to stay strong here like you did for your mother. Think of a whole community of people like your voice teacher, who just want you to express your feelings, acknowledge and validate how you feel, and try to understand as best we can. I think that you have a lot too look forward to. You will get a transplant eventually. Hell, I would donate one were I a match and I'm sure a great many people would make that effort to help someone like you.

Thanks weary. I'm trying to cut myself some slack, but I find it much easier to castigate myself. I don't think it helps that I'm in massive amounts of debt(70 thousand dollars), most of it student loans, and I am only working 25 hours a week because when I work more than that dealing with my symptoms almost makes me feel like life isn't worth living. So on top of all of these health issues, I'm struggling to buy food for myself, and am having to choose between medications because I can't afford to refill a 25 dollar prescription until my next paycheck. I've pursued every avenue possible about reducing payments and I've come to the conclusion that I just need to suck it up and pick up another job, (I've worked two and three jobs before) but the simple idea is almost enough to make me want to start screaming. I'd love to be able to cut myself some slack, but at this point I don't have that luxury. There are to many responsibilities, too many things that depend on me for me to let myself go there. I hate that this is what my life has become--just a never ending cycle of exhaustion and self loathing--but I just have to accept that it is what it is and do my best to survive the next year. Don't mean to be such a downer...but that is just the way life is. I wish it was wonderful and beautiful and all that jazz, but most of the time it seems to be a mass of convoluted suffering that never ends. God, I sound so melodramatic. I apologize for "debbie downer" speech.

That really, really sucks. It sounds very hard. Being in a lot of debt is a lot of pressure (been there) and if you're anything like me, there's guilt and shame wrapped up in it. I understand not literally being able to cut yourself slack if you are stretched so thin with responsibilities. But at the same time, your kidney condition is not your fault... You're not a bad or worthless person and you deserve compassion from yourself and others. You sound like a kind, thoughtful, responsible person who is caught in a very difficult situation. God I can relate to some of the things that you wrote - about not feeling like you can cut yourself any slack, the never ending cycle, just having to suck it up. Those are negative thoughts and interpretations that you are layering in top of the negative situations tat you are coping with, and in time, you may be able to change your perspective even while the situations themselves remain rough.

I care about you after reading your posts, and I don't even know you. Don't worry about being melodramatic or Debbie Downer. You're living it. It's what you feel. It's real. You don't have to apologize for your feelings. You are a tough, strong person to cope with this, but opening up about your feelings doesn't make you weak. It makes you human. Keep venting if you need to. Do you have friends that you can talk about these feelings with? Given your financial situation, I know that therapy is lower on your list of priorities than food or medications but even one or two sessions with a therapist or counselor who works with people with chronic medical problems (maybe on a sliding scale) could pe positive, or some kind of support group. I want to give you a hug and say that I'm sorry you're going through this, that I wish I could help, and that I know in my gut that somehow you will get through this.