Note: I wrote this post last night during a dialysis session ... which I think may explain the "poor me" aspect of the story. I'm sorry about that. Unfortunately, it's all true ... but it is very much a pity party. Some days are harder than others and I think we've discovered that when I get too tired (or overheated, etc.), I tend to get emotional. Stoney deserves more credit than I can ever write here because he pushed himself to the limit this last month ... the whole roller coaster transplant thing, walking long distances to get the car up in Chicago, staying up late driving while I slept, etc. So thank you again, hon. You really are the "better" in the term "better half." And now, back to our story.
Do you know someone with a chronic disease? You might ... and might not even know. A lot of us look normal. We look "relatively" healthy. I wish I had a dollar for every time someone said, "But you don't LOOK sick!"
So, last weekend, we planned a trip to Chicago. It wasn't anything heroic. Stoney drove us to Joliet after my dialysis on Friday and we stayed at a nice hotel right off the highway. The next morning, we visited Shedd Aquarium ... which is stunningly beautiful, by the way, if you haven't been. I didn't touch the stingrays ... #NeverForget ... but, even still, the exhibits are gorgeous.
After a nice relaxing walk through the aquarium, we went to Portillos for lunch. It was Stoney's first time ... and I think he enjoyed it. Their Italian Beef is sooooooo delicious. I've tried to watch what I eat because of the transplant list situation. But I'm not going to lie. I was a little pig! Other than the little piece I gave Stoney to try, I ate my entire sandwich ... and I would've licked the paper if we still weren't in the honeymoon stage. Hell, give me a couple more weeks of wedded bliss and I'll eat mine, his, and anyone else's in arm's reach!
With full bellies, we drove over to Miniature Moose's work to surprise her. Hah! Jokes on us ... she had the day off. So I texted her a photo of her coworker selling us popcorn ... and we were off to the big event. Cubs and Cards at Wrigley Field! And who got the biggest surprise? She was already at the park with her mom and aunt! She came and found us and sat with us the first half of the game. Stoney bought me frozen lemonade ... and Mini Moose shared it with me while the three of us cheered the Cubs.
Okay now. Whoa. Let's stop right there. That's just not true. My love is a Cards fan ... so he was a good sport ... sitting patiently while everyone around him lost their minds. He deserves tickets to Busch Stadium as a reward for that kind of self control.
So ... that's what everyone knows.
What everyone doesn't know is that I fell apart. Just that stuff up there? That took more spoons than I had. Walking around Shedd's was perfectly fine (although we still had to sit and rest) ... but there was no way I could walk from the parking garage to Wrigley Field. Stoney dropped me off and then walked by himself to find me in front of the gates. There's no shade on Addison ... so by the time he got to me, I was overheated.
See, our kidneys regulate a lot of things besides urine. Temperature, for example. I was so very hot ... and exhausted. Stoney got me to our seats and then went to the first aid station and got a cooling pack. He got us water and frozen lemonade to cool my body down. I tried to be as normal as I could in front of Mini Moose, but Stoney could tell things weren't right. My legs buckled during the national anthem ... so I just leaned against Stoney and prayed the guy would just STOP singing. And after Mini Moose went back to sit with her mom, I just leaned my head on Stoney's shoulder and tried to think cool thoughts. Every once in a while there was a breeze and it was Heaven.
Stoney offered to leave just before the seventh inning stretch. I'm aware that I should've said no. I shouldn't have been so selfish ... it was his weekend too. But I wanted to sit in our air conditioned car SO bad. So I said yes and we headed out ... but we were in the same spot as before. The parking garage was so far away. So we walked as far as the police station ... just to get away from the Wrigley crowds. Stoney sat me on bench just outside the precinct door with a fresh bottle of water and went to get the car and pick me up.
And as soon as he was gone, I started crying. There was this heartbreaking combination of guilt for ruining the trip ... of frustration for not being able to do something as simple as walking to our car ... and sadness that I couldn't push any farther. I sat there crying ... looking like a clinically depressed hobo. And it hit me ... "Pull yourself together. You're outside a police station. Someone is going to see you. This is going to become a thing. Stop it now."
And so I got it together. Stoney picked me up and we headed out of town. And I was relatively alright until we stopped for dinner at a McDonald's south of Joliet. We were having a snack and talking about the day ... and I lost it all over again. This time it was just the overwhelming guilt that NORMAL people can do this. That Stoney was changing all this stuff because I couldn't make my body do what I wanted.
And here is where I tell you how great my husband is. Not one single time did he say stop that ... or don't cry ... he just came to my side of the booth and held me. He let me sob into his Cards jersey. He said he knew it was frustrating ... but that it was alright. He talked to me about the transplant team ... and how someday we could do it all.
And we sat together in a McDonald's booth outside of Joliet ... holding each other and ignoring everyone else around us. He made me feel better ... like he always does. I STILL feel guilty for not being able to be like everyone else. I probably need therapy at this point. But we had a good time when I wasn't a mess. And when I DO get that transplant, I'll make it up to him.
Portillo's is on me, hon ...
Nine and nine is eighteen
Look there brother baby
And see what I've seen
Baby don't you wanna go
Back to that same old place
Sweet home Chicago
Blues Brothers - Sweet Home Chicago