Something new

I guess it’s time to talk about something new for a change. The past 2 years has been literal fucking hell. I would have never imagined that this is what was to be. 

I had a bad day at work today. Just out of the blue. Things felt ok when I woke up, but a conference call I was on to fix a problem, apparently someone didn’t like the way it was dealt with. I did fix the issue, however, it’s not an easy issue to find. 

After the fact I was given a different perspective of what someone else thought. Put a pit in my stomach. After hearing this I reflected that I think it’s time for me to become less vocal. Less is more as they say. On that call I was sharing what I was seeing as the troubleshooting continued. There was a guy that would ask ever 2 minutes what the next steps were. It was just frustration from everyone on that call. 

I need to slow down. I need to return to my type B personality. I want to be calm. The advice I was given today was frustrating to hear, but told me that I need to re-evaluate things. I’m just trying to solve problems the best I can. 

I’m still in constant pain. I really wish this shit in my jaw would go away. The swelling has come down substantially, however, I still feel strange pains in the lower jaw, and in my cheeks and nose, which leads me to the simple fact that I need off of these fucking things, but it’s necessary right now. The steriods seem to help, but I’m just wanting faster progress. I guess I’m allowed to be impatient. 

Talking with a good friend a few weeks ago brought up some valid points about PTSD and it’s effect on people who have/had a chronic illness. Never would I have thought that just getting sick would cause deeper impact. The emotional and psychological scarring the past 3 years has definitely impacted me in many ways.

I have been trapped in advocacy mode for too long. I’ve had to advocate for myself to get the proper medical attention. Which all started with UC Health in 2018. Being told nothings wrong but yet I have a massive infection in my face, and a failing immune system. After removing the teeth that helped, but only delayed the problem. 

Being told about the tumor in my head and the simple fact that my immune system is basically gone, was heartbreaking. I still remember sitting @ Health Images where I met Claire. Same type of issues, we were both at war. After the sinus surgery, I got some relief, but it did t feel like it was over. Yes, the ivig was helping me but it felt like there was something “else. 

At the same time, my teeth continued to fail. It felt like there was something in my face tbh. My ent couldn’t find anything, nor could the oral surgeon. So I guess that’s it for that. As the issues still came and went, I got implants. Yes I’m stupid. I rushed into it way too fast, and am now dealing with the fallout from malpractice. 

I’ve been trapped on this nightmare roller coaster and it’s taken it’s toll on me. My attitude sucks as of late. I mean, Ive been through a lot. I am not too sure as to why all this happened, or even how I’m typing this entry to whoever is reading. I should be dead. I cannot begin to even describe the things I’ve had to endure and go through just to be here today. The pain, the literal neglect from UC Health. The hope of Ig treatment, the failure of implants… to only come to find out it was malpractice that stole 2020 from me. 

Anger. Frustration. Remorse. Fatigue. Anger again. Non stop advocacy. Losing trust in people. Self doubt Not allowing others to tell me what to do or how to think and feel. Remember, it was uc health that wanted to write me off as crazy. 

All these things I continually carry around on me. I cannot be so thankful enough that the drill bit has been removed, and the facial swelling has come down significantly. It’s still there, but I dont look like a chipmunk. It felt like someone was just using a sandblaster on my face constantly while using a pick axe to my jaw. I didn’t need my Apple Watch, I could sit there and watch the clock and count the thumps. 

The weekly scig still happens. It is nice having new spots to infuse as just belly open was “not enough”. I did start to get some massive / ugly stretch Mark’s because of it, so hopefully adding in my legs with my belly and maybe my sides might help distribute things around. My immunologist wants to reduce my dose, I just don’t know if I’m ready for that yet. 

I’m still waiting for the attorney to get me the final demand letter going. I really want to move past what happened, and hopefully this will roved some sort of closure with what had happened. I’m hopeful that I’ll get the help I need. I mean, leaving a drill bit in my jaw wasn’t something I paid for or was told that would/could happen. So there is that :(. I really feel bad that I don’t have teeth. I miss smiling (even though I rarely did). Mi honesty miss eating whatever I want, vs the now of soft foods, or whatever comes out of the food processor. It’s somewhat degrading :(. 

But for the PTSD piece. I’m not going to argue. As this week has been shit today. Last week sucked even more. I think it’s a good idea to find myself common ground where I can survive a small fall or bump In the road vs the 100mph 20k ft view of things. Slowing down for me isn’t easy. I’m always one to just being so driven to just put as much effort into something and it will work itself out. This has been the way for years, however, I think this needs a change. I’m going to fast and I’m starting g to overlook things, take them for granted. Not giving things the honest and fair attention that they/it deserve. 

I think the first part of this is the growing distain for people in general. As I’ve watched the medical society just discard me to the side while things got worse, the people surrounding that didn’t care. At all. Things at work were always there, however, for the most part I would just sit back and analyze people at work. I started to notice SBE syndrome. SomeBody Else. Finger-pointing. No accountability. Shifting blame. It was just disheartening, which in turn I tried to use my vocality to help redirect people to a better way, but in the end I found that most people just don’t care enough. I grew overly frustrated when I would tell people things of fact, and observation, and it just didn’t matter. 

Having to advocate and be my voice to the medical community has exhausted me.  I find it really hard now to just make simple doctor appointments just because of what the past has done to me (minus my immunologist). I mean you are raised to tell your doctor what’s wrong, and in turn he will help. I just at this point feel more or less of a burden. Why bother?

I need to find the guy that used to be humble. Happy. Open and honest. Proud of myself. I’ve been missing that person, but that’s just because of all the shit. He’s there, it’s just trying to remove all the rubble from what was basically a war to save my life. I’m still buried in it. Psychologically, physically, emotionally, and financially. 

Unfortunately I have had to make the decision to sell my pride and joy. The golf R is being sold tomorrow. I’m happy and disappointed at the same time. It will help me get out of this massive medical debt hole that I’ve been slowly chipping away at, but that’s something I really worked hard for and continue to work hard for it. I just feel that I failed. The Jeep is what I’ve been driving for months. I can’t remember the last time I had driven vader, but Jesus it puts a smile on my face every time I did. Just a beautiful car. However the Jeep has been doing the same thing. I mean this is Jeep #4, I think I’m a Jeep guy at this point!

As I sit here, I still periodically feel my face pain come and go. The anxiety I have about that is almost palpable. I’m finding it extremely hard to sleep at night. Whether it’s mg brain wanting me to think about everything, or just the sheer pain I feel. I am hoping that this will just all go away in time. The thing that was frozen on the top of my head last week finally started to come off (yuck). It was pretty painful… not gonna lie. 

Time is all I need right now. I am so thankful that I continue to have a career where mg skills are needed, but after today, it was a sobering reminder that I just need to slow way down, analyze, interpret, respond when asked. It’s not going to be easy to do by any means since I am passionate about what I do. I need to learn to take the emotion out and control the tone of the discussion/conversation. Hopefully in time, I can start to find myself again, enjoy those moments more, and just have a better appreciation for things. I am just hopeful that all those years of just being a good person will come back to help me right now, as this has been a pretty challenging thing. 

Tomorrow will hopefully be better than today, that’s all I can try and look forward to.