Calm

Fight or flight. Constantly switched on. Always on high alert 24/7. Mins working overtime. Body not working anytime. Overdrive. Overtime. Absolute exhaustion. 

Whichever label you want to slap on it, that’s what it’s been. It’s been too long since I have felt so strangely calm. I think in most part the victory lap I took when they found the clots in my lungs. I just knew I was right when they came through the door with heparin. The DVT’s were a huge clue. I’m sure that they have been there since December. Just silently getting bigger and bigger. I’m sure having the several surgeries to right me has been … traumatizing told say the least, but probably brought more personal stress that made things ultimately worse. The w

Swelling in my face was not going away. Yeah, I went the infection route. I completely ignored that it’s clots. Just getting worse every week. 

Why?  I hate to say it but…. It’s the Cutaquig. :-/. Yeah. I’ve had suspicions previously that the ivig was the main aggrivator of the clots in my arms. Time only made them worse. Tonight I read research into what I can do. Mostly the conclusions are do less less frequently. I know “the talk” is coming with Dr. Sarid. I know this will be a hard one to discuss. No. I don’t want to stop IG therapy, but we need a safe way to give it to me. Whether it be infuse less slower, switch products.  Whatever it takes. I do know for a fact I don’t want to go back to 2018 where I was constantly septic. So I hope we can find a solution here. I’m sure the right one will probably have me swap to a lower concentration and just infuse every 3 weeks or something. 

The swelling I have been feeling throughout my entire body was real. I wasn’t making it up. Lip got so large it started to break the skin. My face was just constantly on fire. Blaming it on coffee or whatever. All that stuff did was exacerbate a problem that was right there. But you couldn’t see it. 

I would have never thought in a 1000 years that the root cause to all this was clots. I can’t say how my arm clots felt. They didn’t feel great but wasn’t fun at the same time. But the hidden ones in my lungs. Who the fuck knows when they found home there. I’m sure the arm DVT’s were the originating departures. But what probably though this over the top was the leg DVT’s children that made this much much worse. As the weeks passed by, since probably February, my face was swollen. Tight. Painful. Talking was hard as well as eating. The next thing I started to notice was just sheer exhaustion. Fatigue. Taking naps every opportunity I had.  The one thing that was become worse was my breathing. Not being able to breathe deeply. I immediately wrote that off as the emphysema that’s started. So it was me just ignoring the signs. Luckily I adjusted my ig dose from 25g to 20g. But at this point my face was in full fuck you mode. It was extremely sore to the touch. Man’s the inside of my mouth just. Burned. 

As the PE’s were diagnosed I was hoping that maybe this is why I keep swelling. 

A week later’ish, it’s better. My face doesn’t hurt as much. Yeah. I still feel terrible.  I can definitely tell that the clots are going away in my lungs, I can at least breathe better.  But if I can be honest, this has been a fucking shitshow. The past 2 years at minimum, has been traumatizing. Trying to juggle life. Work. Everything. I don’t even know. It’s just exhaustingly frustrating. 

Seeing the hemotologist who’s office literally dropped the ball was awkward. But at least she did the right thing. Kept me on lovenox twice a day. At this point it doesn’t hurt like it used to. For me, it’s just BAU. What thing are we injecting today. I made it very clear to her that I need to be on this for at least 6 months. The therapeutic dose. Not maintenance. Not yet anyway. That same day I spoke with dr sarid via telehealth. He didn’t take the clot news very well. I told him how it started. Etc. you could tell he was upset. 

So I basically told him that I don’t want to switch brands, just reduce what I am taking. He immediately agreed. So from 20g down to 16. I can drop down to 12 next. But at least I haven’t been sick. That’s what’s awesome. I haven’t been genuinely sick since they pulled out that bit. 

I talked tk Lurcott again, surprisingly he’s going to do my ceramic click ins. It’s the best way to go here. No metal whatsoever. Have dr k do all the modification. Barring any problems from the procedure, I think this will get my life back in order. It’s been hell. But somehow I made it through it. I’m hopping all that was the hard part. 

As for me, I’m really tired. Exhausted to say the least. I do het a good nights sleep, but that ends pretty quickly. By 10 I am already dragging. It’s really hard to find the courage to keep pushing forward. I know most people would have given up by now. Rolled over. Quit. Died. Or whatever non negative outcome could be. Medications for the most part keep me moving throughout the day and I’m wiped out once 3 hits. 

It helps but makes me more sleepy in the long run.  This is a touchy subject. That being the current clusterfuck of what’s going on. For starters we have a big Company get together. But it’s not a fun one.  It sure what’s going to happen or what they are going to be saying. Outside of that, nobody is talking to anyone anymore. There seems to be a fog hanging over our entire organization. Attitudes have gone way down. Mine included. Work has become the place where you are only allowed to do this or that. Free thinking and problem solving is basically frowned upon. This week started off like a shit sandwich. People on calls that won’t answer basic questions about stuff. At some point it was said that my questions really aren’t relavent to what’s going on. As always my boss starts yelling at me that my attitude sucks. Look at what these others do. This workplace is just toxic. 

It’s hard to say what my future holds. Slowly day by day my facial pain is going away. I’m hesitant to call this going better but we know how previous blog posts have ended up.