Exhausted

I guess I can start off by saying things are a little better health wise with me. The kidney stone drama is over, although I still think the one on the left hasn’t left. I would really love to know why I get these things. They are pure evil.

Unfortunately, surgery stuff, isn’t over. Somehow I managed to develop an Umbilical Hernia. Which was never there before. Between last year, and now, it just happened. I have a feeling it’s probably due to my Heriditary Angioedema. Which has been flaring like crazy. Since the big ER visit in April, it feels like it’s just been getting bigger and bigger. It’s also pretty painful. Lifting anything, coughing, sneezing, sitting, standing, I am constantly reminded it’s there.

I met with a surgeon last month to talk about repair, surgery is scheduled for December 7th. The procedure sounded pretty straight forward. The CT scans I’ve had (yeah I know don’t get me started), shows that there is a 1cm tear which is how the hernia developed. I’m pretty sure that when my angioedema was being triggered in the old apartment, my abdomen got pretty big, along with everything else 🙁

The procedure basically puts an open incision in/near my belly button. They have to delicately manipulate whatever has pushed through that 1cm tear and put it back where it was. The tear will be repaired with stitches only. For most hernia procedures such as this, a mesh is put in place to help re-enforce the area so that the hernia doesn’t re-develop. Luckily, the tear is small enough to where I shouldn’t need that, which is a good thing. The stuff I’ve read, is certain mesh’s are made of plastic, others are made from pigs/cows. Knowing my body, it would probably NOT like the foreign body.

I’m pretty sure my body would not handle it very well just knowing all the differing immune problems I have, so I’d rather avoid that. One of the things that has to happen prior to the surgery, is I have to stop smoking. Yeah, I started back up when stress and anxiety became unmanageable back in 2023. It’s my own fault for starting back up, but nonetheless, I need to quit. I’ve been reducing the amount I smoke, just going to do what I did last time, and try to quit cold turkey.

Last month, I had a follow up with Dr. Hepworth since the Angioedema incident, and I also brought up the whole face pain / under my tongue pain. The lumps are back again, I’m pretty sure that the Angioedema also had something to do with it since my entire floor under my tongue was super swollen, along with my neck, cheeks, and throat. On top of that, I did develop Sjogrens due to my immune disorder. As he felt around under my tongue, he could feel yet another stone underneath my tongue. That would probably explain why talking is somewhat difficult, as well as everytime I eat, it gets pretty painful. I’ve had a few sialendoscopy procedures done in the past, so hopefully we can clear out the stone and the blockages in my salivary glands.

Surgery was done a few weeks ago, and I wasn’t wrong with my decision to have the procedure done. All of my salivary glands were seized shut again. Postoperatively, I’ve been dealing with a ton of oral pain, and inflammation. During the procedure, they had to inflate the glands to get them to function again. Apart from that, my Angioedema has been flaring weekly. I haven’t let it get to to the point it was at last time, however, the swelling has been pretty significant.

It generally starts in my feet, then moves its way up. I try to save the Sajazir as a last resort, or if it hits my throat like it has several times in the past.

Lately, I’m just mentally and physically exhausted. I haven’t been sleeping much if not at all. I don’t know why, but when I wake up in the morning, it feels like maybe I slept 2 hours. Not sure what that means. During the day, I’ve fallen asleep a few times, or I’ve gotten super drowsy. Because of this, Aggie got me a sleep test ring to measure my O2 levels since my Apple Watch has been screaming at me since last April that I could have possible sleep apnea.

The sleep ring detected that my O2 levels are usually <90% for most of when I sleep, lowest level detected was 82%, (the ring actually alarmed and woke me up). As far as how we go about getting help for that, pretty much the only option is going to be a CPAP mask. I feel like I’m slowly becoming Darth Vader as I get older.

From an exhaustion perspective, I think anyone who knows me has seen me go through a lot. Between the ear surgeries, the kidney stones, the heart attack, I’m just tired. Things have been extremely hard lately just due to the fact that my body feels like it’s 70. This has also played into me not feeling like myself anymore. Lately, everything just feels like a challenge. Like I’m trying to push a 2000 pound boulder up a mountain. The ketamine treatments give me a small break from the mental gymnastics I have to do on a daily basis.

I’ve been struggling mostly with the fact that my body is just starting to fall apart. Since 2020, when I had my teeth removed, with the implants failing, you can see the bone loss in my face. To me, that’s taken a big hit to my self-esteem. I’m pretty sure anyone would feel the same way about it. Secondarily, my body is just trashed from the constant IV’s, chronic illness has just destroyed my digestion tract. Doesn’t even feel like I can digest anything anymore, but that’s also due to the fact I only have 6 teeth left in my head 🙁

I wish things happened differently. I wish I was taken seriously when everything was going bad in 2018, maybe I wouldn’t be dealing with the fallout from the constant infections. Living in the mold-infested apartments is most likely what drove my body into self-destruct mode.

I also saw Veros’s hematologist / oncologist regarding my WBC’s always elevated. Over the span of 3 years, I’ve never seen a normal result.

Another lab that has spiked the last 2 times is my liver enzymes. When he did the physical exam, the minute he started tapping on where my liver sits, that hurt like hell. For whatever reason, my liver is now enlarged. As a precaution, he ordered a few liver-related labs, as well as cancer markers since my risk for cancer is through the roof, it’s better to get things understood than just brushing this off.

He also ordered a CT of my abdomen to see what’s going on, I’ll get that done tomorrow.

Until next time.