My Journey Into the Sun

06/20/2024

Haven’t touched base in a while. But Phase 3 is open for the trial I did for Phase 1! I had zero sun reaction with this medication. I had to eat a HUGE breakfast to fend off the nausea but it was amazing and worth it. I did have some other side effects that took me off of it for a while but at the time- I wanted to continue. From what I understand- I was on double the current max dosage. 😳 but it worked. I just turned kind of purple and they thought I had skin cancer- but I didn’t.

09/24/2023

Haven’t posted in a while. Things have been going pretty well for everyday life. But Scenesse, much like Auburn this week, is no match for an 11am Kyle Field Aggie football game. I am so thankful I chose to wear a visor! I only made it through half time before I had to hide in the shade a watch the game on a screen. I couldn’t sleep last night because of the stinging and burning and itching. I froze my family out setting the ac on 62 degrees but they made it through. The pain is much better today than it would have been without Scenesse. I am still thankful, so so thankful for this medication but it is not full proof and I don’t plan well when I count on it working. My chin, lips and hands got the worst of it, but have not cracked yet. My legs are actually feeling a little normal people sunburn but they are not red anymore. I did use lots of sunscreen. I didn’t even BRING sun clothes🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤬What was I thinking?!?!?

06/05/2023

04/11/2023

While the rain was great for me today- I was unable to get on standby for an earlier flight so I have spent 8 hours in the airport today. Delays, angry passengers. And my dinner. At least I ate this time!

04/10/2023

Wednesday I was told the check arrived at the dermatologist. Called the drug manufacturer and they promised to mail the implant! Delivered on Friday. I bought a plane ticket and Monday, I was on a flight. I am really early for my appointment so they are going to fit me in! I walk out to find pouring rain and a double priced Uber! Walk back in because I’m clearly in no rush. Find a restroom, take my time walking back out to find my regular price Uber! Win win! After paying more than triple what the airfare would have been, I’m saving my dollars. I added up what this is cost my family financially last year. 😳😳😳😳

04/05/2023

After hours and hours on the phone with doctors offices, the insurance company and the pharmaceutical company- we have PROGRESS! Here is the reaction my girls had! Skylar had to keep “busy” so she didn’t get emotional on camera. She hasn’t embraced that part of herself just yet!

04/03/2023

Newest Update.

04/03/2023

I’ve got a lot to update you on! News soon.