I'm the same as you, even though you don't know it.

I don't want to say I've lived a "hard" life, because I really haven't. I grew up on my family's farm on the Plains of Colorado, I had a lot of freedom to go where I wanted without fear, my family was dead-center middle class (for the area, at least) and my parents are still married after 42 years.

I also don't want your pity: While my family life was somewhat normal (albeit the usual teenage angst) my individual life has not been easy. Not at all.

It started sometime around the time I was 14 years old. My life completely changed more than it ever had - I had no luxury of feeling "invincible" like so many teens do, instead I was told I had an incurable, untreatable (as in no known proven treatment) disease of my kidneys that would, from that point forward, never leave my life. In fact, it will probably end my life someday and it has certainly changed my life in more ways than I ever expected.

I've always taken on this kidney thing with as much positive force I could muster. I've faced it head-on an accepted it as the "cards I was dealt in life" Years and years of talking to others, advocating, publicly speaking about my experiences, encouraging, offering words of assurance and comfort, blogging and telling people "you make your own happiness" has made me into a fraud.

But no one knows. They all think I'm great and positive and so very informed and wise "for my age"...

... but they don't know what REALLY happens behind closed doors, away from faces looking to me for "wise words" while bloggers read every word and wait for my positive return comment. They don't ever see me at home, feeling angry, frustrated, depressed or needy. They don't see me struggle with parenting, doing house chores, keeping up with my relationship with My (wonderful) Ken. They don't see the pill-popping, craze of constant pain from recent surgery and how I have to have people help me with even the simplest things like STANDING UP. They NEVER see my other medical struggles with constant insomnia, chronic fatigue, genetically-gifted headaches, and irritatingly, annoying extra sensitive skin. They don't see the fact that I don't like to eat, or that its how I control my stress. In fact, they don't see ANY stress in my life.

NO, instead they think I'm the bright happy positive ADVOCATE all the time. I handle my kidney disease perfectly. I'm informed. I'm motivated. I'm educated. I give advice because I've "been there done that". Yes, I'm the universal advocate for all things KIDNEY.
Advocate?! I think I'm the very essence of the exact opposite of what I 'preach' on a daily basis. I really don't give a damn if I "help others" or "give them inspiration". I get many compliments, private emails and comments on my blog and I act nice, play the game - all the time being mad at myself for not TRULY opening up and sharing the realities of my life. I can't admit all those things, what would people think? They'd think I'm just like them or maybe now that I must be world's biggest disappointment.

I AM lost in life - lost between two realities I've created for myself. There's the public me and the private me. The private me is ugly and flawed and doesn't care, while the public me does a damn good job of covering things up, and being that "inspiration".

I guess the reality is this: I'm the same as you, THE SAME, I've just found my voice and relied on my positive attributes to get me through. I never started out to change anyone or be a hero, it just sort of happened... and then I felt I had to keep up appearances so I wouldn't disappoint anyone. Even though I'm the same as you, I've placed unreachable standards upon myself that NO ONE could ever live up to.

Why do you listen to me? I feel the exact same way that you do, I'm just really good at faking it. I'm so sorry. Forgive me, please?

Hi Krissi,
I discovered your blog yesterday, and even though I'm supposed to be working, I have been completely hooked. I have FSGS as well, and most of the time, I feel like I have literally no one to talk to, because I don't know anyone who has any idea what I'm talking about. I was so depressed this week, and it wasn't your positive attitude, or your spirit or whatever that made me feel better, it was just the information, and the knowledge that there is someone who passed down the same road that I am on, and to know what I can expect to happen to me, and not the cryptive, "we won't know for sure"s that I get from my doctor. But all the real down and dirties. I starting blogging, kind of, even tho I'm no pro. Today sounds like a bad day for you, but it won't last.

Be ez!

Hey Krissi,
I'm so sorry you are having such a tough day.

I myself don't consider you the hero of kidney disease; I feel like you are someone on a similar journey as ours, but you are traveling a little ahead of us. And you have been kind enough to send us some messages about the trip so we know a little more about what's in our future.

I think you are right when you said "I've placed unreachable standards on myself." Kiddo, put those standards down. You're carrying enough already. Just lay 'em down.

And the other thing you said right was that you are just like us. Yup, you are. Just like all of us; beautiful, smart, talented, loving,cranky, tired, and doing the best we can.

Hang in there. Things are getting better.

Krissi

I am doing some work in the equipment side of home dialysis and have been looking at users opinions to get me oriented: yours have been a real help.

So I'm not really your target audience but as a person I wanted to say that it's not really a surprise to discover that you're a person too. We all try to manage our public persona and if you're no longer comfortable with the one you've been giving to date and want to change, that seems completely reasonable.

As to the other comments about this being a 'bad day' - I'd say that if you're feeling confident enough to say what you want to say then it's a good day.

Again, I'm not really qualified to say how other readers will react but I wouldn't be surprised if many welcomed some day-to-day insight into how hard things can be at the same time as seeing the powerful example of someone who is dealing with the hard things.

Keep up the good work.

I think you're putting too much on yourself. *hugs*

(Besides. Perfect people are annoying, which you are not. ;)

The "cryptive, 'we won’t know for sures'" always bothered me, too. I mostly got that response when I was a teenager when people thought I was too stupid (or too young?) to handle the reality. As soon as I was an adult, I started looking for a doctor I could "work with" instead of "wonder about". From that point forward I decided to take charge of my own health by regarding doctors/nurses/medical professionals as FACILITATORS of my health, not the DECISION MAKERS. Its HARD to find a good doctor who will actually give things straight up to you, or who appreciates an "educated" patient... but once you find one with as much respect for you as a patient, as you have for him as a doctor, you'll be a winner.

My biggest advice to you is educate yourself as MUCH as possible about your disease, medications, statistics, and prognosis's - then see if your doctor can handle the "REAL TRUTH" coming from you, or if it makes them uncomfortable with the ball in your court. If its the latter, then get a new doctor :)

You said you have a blog, what's the link to it?

Also keep in touch and let me help you with whatever I can... even if its just chatting or emailing...

Thank you for the reassurances, Dinah... they really make me feel like its "OK" to be a regular person...

Krissi

John -

Don't worry, you are part of my "target audience," because all people everywhere should know more about what its like living with a chronic disease while handling it positively. I hate the ones who have a "why me?" attitude, which I've never been even on my worst of days.

"welcomed some day-to-day insight into how hard things can be at the same time as seeing the powerful example of someone who is dealing with the hard things."

You're absolutely right - and I've been told by many people to stop hiding some of the real reality. For some reason I've not been confident or brave enough to share that side of me. I guess last night it just all came out. And I realize that everyone here is just as human as I am :)

Jess - You're right. Plus I'm glad I'm not perfect OR annoying! *HUGS*

Hey, i JUST started with my blog, honestly, you inspired me to be more consistent with it because of how helpful your story was to me. So check it out HERE . Hmm, does html work on this thing?

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