Unrelenting Illness

I don’t even know where to start this post. It almost seems that I am not meant to get better.  Every time I turn around an make a little positive forward progress, I get knocked back a mile. After working with my ENT to get the Linezolid prescription, things started to get better. 3 weeks into it, and the pain starts to come back. It’s in 2 places. My face, and down below. 

Had to go to the ER for this pain that would not stop. It felt like someone was kicking me right in the crotch. I didn’t want to go in, but my wife made me. Another CT scan, and to my surprise, another kidney stone. 

Frustrated and exhausted

I have a lot of things on my mind lately.  Dealing with this chronic illness for the past 3 years has taken its toll on me. The overall frustration with everything has started to rear its ugly head. I cannot win. I wake up every day feeling like the hope of getting better has become more fleeting than encouraging. I’ve become dejected with most things. My life has simply become a fixed cycle of pain, exhaustion, disappointment, and frustration. 

With the recurring ER visits, I really don’t want to do this anymore. I’m seriously done with doctors that have 0 compassion or the ability to listen. The kidney stones have been excruciatingly painful.  The morphine just makes me not care about it. 

“But wait there’s more”

The oral issues I have been fighting nonstop have become worse. The swelling and gagging feelings are back. Along with cysts. I’m at the point of fuck it. I went to my oral surgeon, who just made it sound like it’s my immune system doing this and it’s systemic. It’s all I ever hear from him anymore. Systemic. Neuralgia. I’m complicated. 

No. Shit. 

I opted for steroid shots again. Dexamethasone. However, after the 2cc’s. My face was on fire. He must have hit like 2-3 cysts directly. Nothing but pain. Later that night I started to just feel miserable and dehydrated. My body is just inflamed.

I started to look online for at home IV services. The first one didn’t work, but I did end up finding a service that is 24/7. Super awesome people. Because of the kidney stones, the medications, and my lack of motivation, saline is helping. They also offer torodal and a wide gamut of vitamins. It’s expensive. $200 a visit. But for right now, I feel that I need it. 

A day after the shots, I’ll be honest. My mouth was swollen. My tongue has been turning black. The cysts are all over. And my head just hurts. I wound up fucking up my doctor visit for my ENT, and my dermatologist so I ended up having to reschedule. 

I called my immunologist. He’s always my last resort and my only real safety net. I showed him what was going on, and he called my ENT’s PA. She was the one who helped me initially 2 years ago. She’s been gone for awhile. She had a baby girl. She showed me the pic, too cute. She then “broke a rule” by seeing me the same day. She felt my face, and was shocked. I showed her my tongue and told her that this ship is sinking fast. She added a new antifungal. She thinks it’s that. So now I’ll get to be even more nauseated. 

I had another appointment with my dermo, after my missed one. And I showed him all the cysts he injected 2 weeks ago weren’t smaller, and the new one that’s in my left cheek. He agreed something is wrong. And shot me up with more steroids. I did tell him that I just want them cut out at this point. There is an infection in my face. Even though the CT was clear, you can clearly see them and feel them. They are there. And real. And painful.