Still Struggling

After leaving my dermo’s office, he gave me more Cipro. I think for the most part it’s the antibiotic that’s helped the most besides Vancomycin. This whole week has been … a struggle. And no not a struggle where it’s like going up a flight of stairs (yes we’ve all been there). It’s taken a lot of energy to get out of bed, get dressed, and physically go to work. It’s been hell. And I don’t mean work. It’s actually nice to see and interact with co-workers again. For now we are working 1 week from home and 1 in office. Not sure how long this will go for, but it is helpful. But as I sat at my desk, my face had just continued to hurt. I’ve been feeling my heart beat in my jaw again. Exhaustion just hits me in waves just like the pain in my face. 

It’s hard to fathom that I’ve gotten this far running on so little when I think about it. Since probably the end of 2019 till bout now. Having to experience pain. Daily. Not being listened to. Being called crazy. Being doubted. 

Scarring is one word to describe how things have transpired. My body has been at literal war for almost 2 years. I have been stuck in high-alert mode.  

As this week progressed, the pain between my eyes just stared to turn it up. As every day passed, the pain becoming worse. It was my cheeks, nose, my sinuses and my eyes. Just burning. Constantly hearing creaking from my face. Back on morphine again. Holy shit this hurt. Feeing my heartbeat in my face once again.  So Thursday I decided to stay home and just lay down. At the time it field good to lay down, but the minute I needed to sit up and go do something, woof. There it was. As per usual I tried the sinus rinses. It seemed to my make things more angry. The bloody spots for

awhile seemed to have calmed down, but they are still there. All day I was basically miserable. I really didn’t move much from the couch. More towards the end of the night my face felt like I was starting to implode. My nose felt like it was going to crawl away. I kept trying eyedrops, but man they just burned. 

Friday morning I woke up with an immense amount of pain between my eyes nose and throat. My eyes were super crusty, and my eyes were starting to go red. Stack on a headache and I just stayed in bed. I did the online thing with Anthem, but they jus prescribed steroid drops (which never made it to CVS). About an hour later the pain was getting worse. The creaking noises, the crap running through and out the back of my nose, and you guessed it. The blood is back. 

So I logged into anthem and started looking for a ophtamologist. Somethings wrong. Vision is blurry, I feel like someone keeps puts cigarettes out on my forehead.   The fronts desk lady had a 9:30 but needed all the paperwork done prior. Lol. Done in 2 minutes. It’s really sad to be efficient how to fill those out so fast. It’s not a good thing. But I was able to get in and met the new dr. (At this point I didn’t tell him about Sjogrens). As the exam started he noticed I was swelling in my eyelids and the sides of my nose. Did the vision exam where the boop your eye. Man. Those lights were bright as hell. As the exam progressed he asked if I feel inflammed. He noted that I have pretty severe inflammation in my eyes and nose. He start to go down that road and I let him know about the sjogrens test. It helped him put together a game plan. For now. Antibiotic eye drops for a week then see how things go. Not only 24 hours after starting them, my nose and eyes feel so amazing. Almost like someone put out the fire. 

He wants to see me back in a few weeks for dry eye testing, and I gave him my immunologists info. So that way they can talk. He most likely wants to put me on steroid drops. But I’m just glad we are moving somewhere. 

I can honestly say that I feel 20% better than last week. Getting the jaw surgery was needed. Getting rid of these cysts in my mouth were needed. But all I’m doing is trying to get back to whatever version of “normal” I can have. 

We did manage to sneak away today up to Pikes peak. The drive was fun, the top is kind of a clusterfuck. Is a bit nerve wracking sitting there going up an incline. But I’m super happy I was able to get out of the house and finally enjoy something that isn’t an ER, Doctor Office, another surgery, or whatever else medical problem wants to be a problem. 

It felt great getting the fuck out of dodge. We woke up at 6am. Got ready and headed out for some trails. After the trails were done, we passed by the turnoff for Piles Peak. Best 2 hours ever. It was fun until we got to the top where everyone was just stopped. People kept walking around against the traffic going down. 15 minutes later we got a spot. I officially did my first 14r. It felt good look back at the 3 past shit filled years. It felt good to just stand up there. 

We rolled through the giftshops and the cafeteria. Wasn’t able to get Chili, guy ahead of me gor the last bowl. 

All in all it was great. Got to spend some amazing time with my wife just getting out there. I hope that we can keep doing this more and more. I’m sick and tired of sitting at home trapped between the same 4 walls.