Hill to the Left of Me, Hill to the Right

There’s a roadside attraction of sorts in Lake Wales, Florida called Spook Hill. You throw your car375668_10151609135427310_82917642_n into neutral at the white line and it rolls uphill on its own. Or what appears to be uphill. I think I remember the whole extended family driving over one time from Bartow where we spent our Christmases. My grandmother probably sent us just to get us all out of the house for a little while so she could breathe. Pretty sure I was unimpressed by the whole rolling backwards uphill thing. I was older than the pic to the right, but I’m going to guess that the face I was making was likely the same.

Today, doc told me I’ve relapsed. Again. What is it now? Four times in three years? Five? I really can’t remember. It’s abundantly clear that my body wants me dead. Unfortunately for my body, it’s dealing with a brain that has zero fucks to give about what the body wants. None. My brain is like the weapon of an apathetic martial artistโ€”nonefucks.

I stole that. Ha.

In March, I went for a second opinion at Shands in Gainesville. ย It was an impressive facility and the doctors spent over two hours with my mom and me, going over all my medical history and discussing it in minute details. At the end of the visit, they said my doc has done everything they would have done. My mom asked them point-blank what they would do if they were me. The main doctor said if she kept relapsing on prednisone, she would try another immuno-suppressant. There are more out there that carry their own barrage of side effects, but staying on steroids forever is brutal on the body.

First things first though, get me back into remission. So a pounding of prednisone is what the doctor ordered. Took the first dose of the increased regime tonight. Back to the big guns…bigguns…BIG ‘UNS. My mind so frequently warps to Al Bundy, it’s slightly disturbing. What is that about? This isn’t funny. Thing is, if I can’t laugh about it, I won’t make it through. That’s true for everything that’s difficult for me. I can be upset, angry, and grieve, but eventually I gotta start laughing.

Doc says, “You’ll have all the energy you need now!” Thanks for the random bit of enthusiasm, but it doesn’t suit you. And, yeah, I admit that my stock response to the question of “How are you?” has been “Exhausted.” for the last few years, and I do hate feeling slothy and narcoleptic, but come on. What he really meant was, “Bring on the insomnia!” And I don’t know why I just bought that loaf of fresh bread from the bakery while picking up my pred script. Unless I want to balloon up like Violet Beauregard, carbs need to stay the hell away from my face-hole for the next few months until I’m back in remission.

And then I get to try a new immuno-suppressant. The last one I attempted made me itchy all over and straight-up suicidal, but I’m optimistic about this next one. <—That was another joke. I try to stay away from optimism. It’s how I keep from being disappointed in life. Or is that why I keep my expectations super low? Maybe both.

Fact is, either option is craptastic in its own way. Quality over quantity. Quality over quantity. Quality over quantity. If I say it enough, it’ll make it okay, right?

At the end of the driveway this evening with the dogs leashed and ready to go, I looked left, I looked right, and I realized I live in a valley. Whichever way I go, it’ll be uphill. I can put my drive into neutral and hope the roll happens on it’s own, bringing with it the optical illusion of fun, but I’ll still be going uphill.

 

Faces of accepting yet another relapse:

This slideshow requires JavaScript.

 

 

Advertisements

Remix to Remission

Here’s what one year in remission looks like with hair that is growing back in as if Einstein and Farrah Fawcett had a love child. It’s been quite a year.

I’m much stronger today than when I first got the results saying I was in remission. I remember how happy and shocked my doctor was that I had gone into it so quickly. It’s a look I will never forget. Relief.

One year in the clear and I won’t stop improving on this remission business. Suck it, Nephrotic Syndrome.

SavedPicture-2014102484525.jpg