Let's talk about happy stuff! I went to clinic on Friday and we are going to try reducing my photopheresis treatments to once a month. Happy and scary all at once. My doc assures me that if I start having problems we'll increase them again. Since my IV track marks are getting bad, giving my veins a break will be nice. I also didn't get completely ignored when I asked about reducing my prednisone!! Making progress!! Still not gonna reduce it yet but maybe if the reduced photo treatments go well I will ask again. The squeaky wheel gets the grease... and I am relentless :-)
The weather here in San Dawg has been so amazing (well, this week has kind of been cold and rainy). Can you believe I've lived out here 11 years? That's the longest I've lived anywhere. I feel like my soul has been here forever. My favorite months are Jan/ Feb/ March. The tourists aren't around so the roads aren't too crazy, places aren't crowded and the weather is magnificent and warm. I was sitting on the couch last week with the windows open enjoying the sound of the breeze through the palm trees and the birds chirping. Very peaceful.
I'm actually getting a bit of a tan from my hour long walks almost every day (even with spf 50 sunscreen slathered everywhere). I haven't felt this healthy in probably 7 years. It's awesome. It's kind of hard to describe. I think it's something only people who have survived some sort of horrible illness can understand. You don't really want to believe that you are as sick as your doctors say you are, but man o man, I was one sick puppy. Maybe I was in denial. Who knows.
I'm looking forward to this summer. Jeff will be home (maybe... haha!), my lungs are so much better than last summer and we can walk down Adams to eat good eats, drink good drinks and then stumble home. I don't know why, but stumbling home from the bars is seriously kind of invigorating. Maybe it's because I CAN. We were walking home one night a few months post transplant and I started complaining about a blister. Jeff grabbed me and said "Do you know what that MEANS, Katie? You can walk long enough to get a blister!" He was so happy. Oh yay! I was still miserable with my blister... grumble grumble.
I would go for long walks and get stuck in Pensacola. The first time I couldn't make it home Jeff got worried and came and found me sitting on the curb embarrassed, exhausted and upset. Then I took a phone when I walked alone and it happened again so Jeff wouldn't let me walk very far without him anymore :-( Even then sometimes he would have to leave me to run home and get the car to come pick me up. It's pretty horrible realizing that you simply can't walk anymore and have no energy to get home. I just completely ran out of spoons. But now I can walk all day! It makes me SO happy. I can walk and walk and walk (wish I could run...).
We got some rain recently and luckily I didn't have to go anywhere. I love looking at SigAlert to see how bad it is. Love San Diego when it rains! No, not really.
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| Ready, Set, Everyone drive like idiots! |
A SoCal problem is that my car has developed a shimmy when I go faster than 80 mph (on DRY roads people!). Sigh... I guess I should get that looked at ;-) I need to keep up with the flow of traffic for goodness' sake! I can't ever own a sports car because I drive like my hair is on fire (assertively... not aggressively... there's a difference). I would be poor from tickets and eventually have no license. But driving Jeff's car is ridiculously fun. Although somehow I always get stuck driving it down Adams... a million stop signs/ lights and a 1st gear that requires full throw of the clutch are quite annoying.
So a relatively mindless blog post about not much. Oh! Here's the Homeless Man story I promised.
Holly and I were walking back to the weird Navy base after the Hornblower cruise with Kim et al a few months ago (we park there cuz it's free and cuz I can walk and walk and walk...). There was a homeless man sitting on the ground along the dark side of the building that we had to walk past. Holly wordlessly maneuvered herself so that I'd be near the street and not by the dude because she remembered my encounter with a homeless man years ago.
It was after I was diagnosed with PH and I was walking my normal route past the Trolley Barn Park in University Heights. I generally ignore homeless people and I've never had much fear living in San Diego. I haven't been shot driving through the barrio yet! Well, this guy comes right up to me, starts screaming incoherently, rips the sunglasses off my face and throws them in the street. There is no one around and I can't run. I can't get away and I have no desire to fight a mentally unstable man. Well, I'd likely pass out if I attempted any spurt of physical exertion. The PH was getting worse (this was before I passed out in the street) and I was already completely out of breath from the little hill. I was a little freaked out.
Luckily some cars drove by and one person stopped and kind of scared the guy off and asked if I was okay. I said yes, but after another few minutes of walking the reality of how absolutely helpless I now was with PH hit home. So while I still don't have fear per se... it was VERY nice that Holly just changed places with me so I didn't have a few seconds of paranoia as we walked past. That is love. Thanks Holly Lolly :-)
I could tell horrible PH stories all day.... but I won't! It's April, spring is in the air and life is good. Get some fresh air and hug somebody. I'll hug Max and remember not to put on lipgloss before I smooch all over him or I'll be covered in fur... so gross!!! I like to smooch him on top of his head where he can't lick. He hates it! Mwahahaha... I'm evil :-)
Hey! I think I managed a post without any swear words! A miracle, for sure.
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