Struggling

The last few days have been really shitty. My neck and cheeks just burn. I know it’s progress. I hurt less. I’m starting to get some energy back. It’s been a long time coming.

I spent last weekend reflecting on the past and how I got to where I am today. As I flipped forward in the pictures, I could see a gradual change. I knew it was there. When I got to 2018, after the mouse in my desk, that’s when you can easily see my downward spiral.

The rashes. My god. They were everywhere. The signs were there, they were just ignored. For too long. I can honestly admit that I did get PTSD from all of this. Why? Because I’ve been saying the same things for years. YEARS. I’m at that point where I have lost faith in almost every doctor.

I guess maybe this was some sort of sick test. Seeing how my life has just been absolute shit till about 3 weeks ago. The rocephin has made an extreme world of difference. The daily nausea is almost gone. I’m able to walk long distances again. My vision which still sort of sucks does seem to be getting better.

I’m glad I pushed through all of this. I know I am an extremely strong and resilient person, but Jesus Christ did this test my patience.

I guess it was just too many issues that tipped me over. First and foremost, CVID. Yes. This is why I was sick my entire life. UC Health couldn’t have been more wrong… with everything. Mayo included. Yes, they helped with the diagnosis, but really fell short everywhere else. It’s my firm belief that the CVID is and was the culprit of the tumor and all the sinus issues. I’ll even throw in all the oral issues.

What I would have never expected was getting Lyme from a fucking mouse in my desk. The more and more I reflect, the more it just makes sense. All of my problems since 2018 was because of Lyme, and the lack thereof an incompetent immune system. It makes sense as I started the iG therapy in 2019, things started to spiral out of control. Quite similar to the slingshot effect of what could go wrong did go wrong with Chernobyl. Every bad choice doctors made just pushed my body further and further into meltdown.

I can honestly say that when 2022 hit, I think I was near death. The pain, the pressure. Everything. It seriously felt like the walls were closing in. And they were. The dumbfounded responses I got from doctors didn’t help at all. I could feel my body becoming overtaken by something very slowly. I asked for help. Got none. Started screaming for help, was called crazy. Then when I became an asshole, it caught the right attention. I’m pretty sure the breakdown I had in Hepworths office pushed him to do something.

The struggle to carry on everyday knowing that there’s this huge unknown thing that is literally killing me, and having to get to work became almost impossible. I remember just telling myself to just walk through the doors and just be present. Don’t really have to do much, or anything. My work self was somewhat on autopilot. I got stuff done, just not anywhere close to the speed I used to be capable of.

Getting the new job allowed me to buy time to think. My old job probably would have killed me if I would have stayed any longer. The irony of that….

I really am glad that I made it this far. I’ve made more progress in the past 3 months than I have for the past 5 years. Hopefully soon I’ll be able to go out, and do the things that I want to do without having that lurking feeling of “gonna go septic”. Which by the way, thankfully, I haven’t felt since the mastoidectomy. The rocephin has been doing wonders for everything else.

Last week I had to move all my picc line / antibiotics away from Hepworth, and was probably the best solution to get me better. Dr. Naylor has really championed my treatment. I still remember mg first appointment. Having to go through that first “session” with him. I still don’t understand the literal motions he was going through. Waving different medications over me. But hey, putting some belief into that process gave him the belief in me that there was and is something wrong. I did manage to get yet another 30 days of rocephin, which is a huge relief. It was too easy.

Hopefully I continue to see the gains that I’ve seen in the past month in the month ahead. I am finally hopeful that there will be that day when I’m able to walk out of this tunnel with some semblance of health and happiness.

This experience has scarred me tho. I’m starting to realize how I put up a huge wall with everything and everyone, including myself. But hopefully I can soon put all this behind me and I can just look forward to having an ok life to look forward to.