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
Category: CVID
Can’t sleep
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
Freedom From Pain
Yesterday was ketamine. I was looking forward to this appointment for many reasons. For starters, earlier in the week, I got an email from Klarisana that they now accept and bill insurance directly. This is a huge change from what it used to be. Before, you got a bills, and submitted it to insurance. The… Continue reading Freedom From Pain
Slow Progess
Well. Progress is progress. Moving in the right direction for once. The proverbial downward spiral of the last 5 years seems to have stopped. Over the weekend I had a near-anaphylactic reaction to Starbucks. Everything hurt. Burned. My tongue was black. Again. Which got me to think about what I’m doing wrong. It’s the amount… Continue reading Slow Progess
Labs :(
Been a long hectic week so apologies for no updates. I did get my labs back from my past IVIg therapy, and my WBC’s have shot from 9 back to 16.7. I’d really love to know what’s doing this. I really would. At this point I have no idea what’s doing it. I did see… Continue reading Labs 🙁
The Outbreak Continues
Well here I am. At 8:40pm. Reading up on shingles. Which antiviral to take, and when. I’ve been religiously taking 1500mg of famcilovir 3x a day (500mg each time) daily for 3 days. This afternoon, I started to get itchy. I mean burning itchy. That’s when I realized this is something else. After I came… Continue reading The Outbreak Continues
Up Early
The past 3 weeks has been a wild one. From my previous posts you’d know exactly what I’m talking about. Saturday morning was ketamine. I wanted to make sure up up early enough to get a dose of Dilaudid started before the session. Typically I’m asked to hold it 4 hours prior. Saturdays session isn’t… Continue reading Up Early
More Exhaustion
I’ve been up half of the night. Yeah, took my normal meds at 9:30pm last night. But my body has just been .. off. Between my face/mouth hurting, and the random body lockups (yay charliehorses), and just my body just not wanting to rest has me all backwards again. Last week I was off from… Continue reading More Exhaustion
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Describe one simple thing you do that brings joy to your life. Help others when they need it. Simple.
Officially Back Online!
Sorry for being off the air for so long. The past 7 weeks have been extremely busy. I apologize in advance, this will be a LENGTHY post. A lot of good, not so good, and terrible things have happened since my last post before the blog decided to kill itself. The home hosting stuff I… Continue reading Officially Back Online!