Yesterday I Felt Like I Was on Fire

On Friday morning, when I woke up. I was met by the usual Charlie Horses in my calves and feet. I waited in bed for about 10 minutes for the spasms to let go so I could get out of bed. The night before was abysmal. Maybe slept for 24 hours total. Kept waking up to my sinuses just on fire. My mouth was on fire. I’ve talked about it before, but it feels like I am covered in fire ants. Just an overall bad night.

Perhaps it was just nerves / anxiety building for what Friday was. I had a CT scan done again to look at my sinuses. Which was ordered Monday by Hepworth’s PA. But it wasn’t. Little did I know what was coming. Again, I really need to do a better job of being self aware. Yes, I am feeling somewhat better since we evacuated that hell hole, but I keep forgetting that I’m still infected. I do get reminders I am still dealing with an active infection that nobody clear cares about.

After the CT was done, I was wiped out. I was gonna go to work, but after that, I couldn’t do it. Radiation definitely has an impact on me.

Around 7pm is when I started to realize that it’s my Mast Cell Activation Disorder (MCAS) going into overdrive. As the panic and anxiety started to peak, I started my protocol. 50mg hydroxyzine, wait 30 minutes, 50 mg of Prednisone. After the prednisone, I called Dr. Sarid via the “on call” options when Immunoe is after-hours. Thankfully Sarid is the Physician on-call this weekend. Told him what was going on. I told him that if after an hour passes with both the Hydroxyzine and Prednisone, that I’ll have to resort to using one of my Epi pens. Once MCAS starts, it can get out of hand very quickly and a small snowball can turn into a life-threatening avalanche in a matter of hours.

He agreed with everything I did. “I’m so proud your one of my only patients that remember the protocol”. I told him that it’s the fungal infection doing this. Since I’m a class 4 for every mold, it’s only logical that the fungal infection is fueling the allergic reaction, which in turn makes the HSV-1 flare, which makes the MCAS flare more. A vicious cycle that I can only fight so long until my body decides to just go into meltdown.

LabCorp also messed up my name on the lab report from when my IVIg was done on 3/22. Earlier in the day, I reached out to Lisa to get me the lab report. Needless to say I wasn’t shocked 1 bit. My WBC is back to dangerous territory @ 19.2, up significantly from 16.4 which was drawn on 2/5. It’s quite clear this fungal infection is winning. The posaconazole is just delaying the inevitable septic episode that will hit soon if they don’t give me the proper attention I’ve been screaming for over the past year.

I sent them to Sarid, which in turn he’s pulling a 5 alarm fire with Hepworth & Sarah (who I saw last Monday) to discuss immediate surgical intervention. The infection in my Sphenoid needs to go, long with the debridement of my face with all the crap I feel moving around in the left side of my face, inside my mouth, along my jawline, and neck.

I don’t understand why Hepworth wouldn’t do it last year, or I wouldn’t be in the position I’m in. That’s the only disturbing part about this whole deal. Thankfully I have Dr. Sarid in my corner, Hepworth will just have to make time to get this done ASAP, and by ASAP, I mean done within the next 1-2 weeks. I don’t care what it takes. Or refer me to a different ENT if you cannot accommodate this problem which will become a serious medical emergency if it’s not dealt with now. Not in 6 months.

Thankfully with 15 minutes until Epi, my body started to back down. The symptoms started to calm down. Taking a shot of Epinephrine is not a fun experience. During 2018 till now, I’ve probably gotten at least 18 in ER shots of it (Subcutaneously) and have had to do it myself twice. Once while driving to the ER.

It’s nearly almost immediate. Your entire body goes into fight or flight mode. Your heart starts to race. You feel this everywhere in your body. You basically go from 0-200mph for about 10 minutes, followed up by the next hour of “coming down” off of it. Your exhausted. Emotional. Just spent.

I hope action starts happening soon. I can’t sustain this for much longer.