Category: CVID

The unexpected turn of staying an extra 2 days was a surprise. Dr. Joshi was well worth the visit in the first place. I still can’t believe she got me in front of everyone so quickly. For starters before I go into it, when we rebook our room at the Kahler, we moved to a… Continue reading Heading Back from Mayo

This morning started off early already. They pulled quite a bit of blood from me this morning. Looking at the screen, Dr. Joshi ordered a lot of stuff. Some of it was immune related, but she already had the genetics labs pulled. My next appointment with ENT (Ear, Nose, Throat) is this afternoon at 2pm.… Continue reading Vampires Strike

Well. I don’t know where to begin this blog post. Firstly. That drive was the absolute worst. It definitely took its toll on both Aggie and me. She slept almost all day yesterday. We talked in the morning, trying to figure out where to eat, plan of attack for today. Soon after we figured out… Continue reading Answers… and Hope

Time flies when you’re not having fun. To piggyback off of my last post, my face continues to hurt, and my neck. Ever since my heart attack my back has not felt right. At all. Way at the bottom. It was always aching. Well this past month, things changed. Pain started to radiate towards my… Continue reading Lots of Updates

I haven’t written in awhile. I’m sorry. The past two months have been horrible. Absolutely horrible. Everyday I wake up with the hope that it’s going away. It’s not. The swelling continues to get worse along my jawline. The absolute fire of my entire face, left ear, mouth, and neck is excruciatingly painful. I literally… Continue reading A New Level of Pain

Friday was IVIg. New nurse too. Lisa I guess moved on. Soleo is now outsourcing nursing to Enliven (never heard of them before). Friday started out early for me. Getting a needle shoved into your chest by someone new is an anxiety-inducing thing I always go through. I tried to get as much work as… Continue reading 72 Hours of Hell

Yesterday was terrible. Between the pressure drops, and the overall inflammation in my face and mouth, I don’t know what’s worse. People often ask me “Hey what are you doing this weekend?” My atypical reply is “nothing”. The only thing I do on the weekends is try to sleep as much as possible. Rest. Chronic… Continue reading Controlling Inflammation

Every morning it’s the same thing, I wake up to my mouth, throat, and sinuses on literal fire. It’s become a daily challenge to stay focused on the balance of keeping up with work and the constant reminder that this isn’t over. It’s been frustrating to say the least. I get ahead, to only be… Continue reading The Fire

The worst part about all of this pain I continue to endure, is my inability to sleep. Ambien helps, but lately it’s been taking anywhere from 1-3 hours to kick in, whereas before, it was within 30 minutes. The crazy rash that decided to show up on my chest and back almost looks like an… Continue reading Can’t sleep