As a joke, this is what I’ve felt like lately. I’ve lost count. I’ve probably passed at least 7 stones so far. I’m just sick of the pain. I don’t see how, or why all this is happening. I never had one up until now. It’s just a non stop barrage of of them at this point. I will be honest, they fucking hurt. But I’ve grown accustomed to pain in general. I’ve always had a high threshold of pain, but Jesus has these been testing me.
As of late, things pretty much suck. I’m in constant pain all the time. However, things are changing rapidly. My face feels very weird. It feels like it’s constantly draining. My nose and surrounding area constantly feels like something is moving around. I’m not crazy. But it just feels like something is in my skin. I feel it every day.
I went to see my oral surgeon who did the usual dexamethasone shots in my mouth. I am not sure at this point if they are helping, or working against me. Steroids are a dangerous game if an infection is in play. After getting shot up, it felt better, but the only thing that’s the downside of that is it feels like I ate a bee.
The antifungal seems to be working. As much as I can tell, it seems to help. It may play into the feelings that I am having in my face and head, so I am hopeful that it’s clearing up the obvious fungal infection I had. I’ve never seen my tongue that black. Probably the worst I’ve ever seen. It was definitely uncomfortable. I have another 10 days or so on it so I get I will see how it goes.
What’s strange with all this, is that ever since I started my SCIg, my body has just gone crazy. It feels like it’s doing a better job than the IV variant, but it seems like my body has really struggled overall with it. I can’t tell for sure, but it seems like my body is dealing with a ton of inflammation. My right foot keeps mysteriously swelling up for no reason. My face and neck feels really stiff. I should be worried, and telling the doctors, but I’ll be honest, I’m not. I’ve gotten really tired and disappointed in telling my doctors what is wrong. It most seems like what I talk about comes across to them as nothing.
My dermatologist finally took out the cysts that were extremely irritated and painful. I’m really glad that they are out. From what he could determine, they are lipoma’s. Not cysts. I took a look at them, they honestly looked exactly like the mucoceles that were removed awhile ago. For labs, I told him we need to test for everything under the sun. I really want and need to know what the fuck they are. It’s unexplainable that I’ve gone this long with all the facial issues with no real answers. Could this just be all a byproduct of my immune stuff? I don’t know anymore. It’s been exhausting having to drive people to help me figure all this out.
I saw my ENT yesterday. I had my wife come with to that appointment. It just feels better when she comes with. Another set of ears, someone who is just so understanding of my problems. In the past, my ENT has gone off of the deep end during my appointments where “things aren’t what they seem”. Which makes me look & feel like I’m making this all up. I can absolutely assure you that this is all real. Every single ER visit, lab result, and painful experience I’ve had to go through is being caused by something that has yet to be determined. He really didn’t offer much up this visit. I told him all the things that were going on, he just seemed rushed and and disinterested in listening. My biggest concern is what is the correlation to all the kidney stones, and why all of a sudden. There has to be something that can help pinpoint that. He went on to talk about wearing masks and oxygen/carbon dioxide. I’m really not sure where he is going with that. It made absolutely no sense. He rambled on about a few other things that I really didn’t pay attention to, ordered a CBC w/ Manual Diff and sent me on my way. I am really not sure if I should continue going to him. I mean he is a great dr. He has been immensely helpful in the past, however it just seems that he’s no longer invested in figuring out what’s wrong. He seems like a really smart guy, but I think he’s getting erritated and annoyed with me. It’s just a sense I get when I see him. “Oh god this guy again”. That’s the main reason I bring my wife with now. I know it’s unfair, and realistically unnecessary, but it makes me feel better that I have a second set of eyes and ears. The one thing that has been my experience in all of this is the amount of things talked about, and what is talked about.
The future is really up in the air for me at this point. I really don’t know what’s around the next corner. My biggest fear I guess is losing everything. I’ve worked so hard to get where I am today. I have sacrificed a great deal to be where I am. I would hate that all my efforts are just in vain. If you’ve read my blog, my life has not been easy by any means. Ever since I was a kid.
Mom would always be there for me no matter what. She would always take away the worry. Finding a way to calm and slow down what was going on. I seriously miss my mother every day. She is apart of my thoughts constantly. Even more so today. Let’s be real. What’s happened to me in the past 2 years would break anyone. No joke. It has been the most polar opposite experience. Going from being generally “ok” to almost dying in a hospital several times. In a matter of months. It happened that fast. No more than you would blink. I miss not having to deal with all this. Nobody, and I mean nobody should have to put u with, and deal with everything that I’ve had to go through. You have no idea how many times a day I think about “how things were”. If I had to pick 1 thing that is the worst in all of this, is the pain, and discomfort. Specifically in my face. The feeling that something is in there that nobody has yet to figure out. It’s hands down the worst experience ever. I swallow so much morphine. It’s rediculous. People don’t realize what it’s like to be “healthy” and how it’s taken for granted.
Today I have to get more labs done. As I stand here in the waiting room, Jesus shit has gone south. The overall mentality of people is astounding. Everyone is on autopilot. Just going through the motions. COVID has really cast a shroud of fear over everything, and everyone. I don’t see the carefree attitudes anymore. It’s like someone wrote the formula on how amazing things are on a whiteboard allowed people to see it, and just erased it. I see the frustration in people’s faces. I can relate. It’s felt like this for me for a long time. I can admit more than most, I’ve lost faith. My attitude as of late still sucks. I am having a hard time finding the positive in things for the most part.
As much as I want to write that things are better, and that I’m becoming healthy and free of whatever has been doing this to me. I can’t. I’m finding that it’s futile to hope to get better at this point. A small part of me thinks there is some underlying terminal condition yet to be found. I’ve gotten to the point of “whatever”. The medical system to this point has “gotten” me here, however it seems that the more I push, the more I try, the more I fail. At the end of the day, I want to get better. I want to get back to “normal” as best I can. But at this point I don’t think it’s obtainable anymore. I honestly feel like I am in a slow death spin. All I can do is sit here and experience it. No way off this ride. As scary as that sounds, that’s what I’ve started to settle on. Getting out of bed each day is getting harder for me. The level of pain that I am dealing with is slowly getting worse from what I can tell. There were some days where I would go a few days without, but now it’s a constant 4 hour thing. Whether it’s my face, or another fucking kidney stone.
I guess I could summarize this post as things fucking suck. I hate where things are going, yet I sort of just want this to be over at this point. One can only deal with this for an undetermined amount of time, and it feels like that’s where I am at… running out of time.
As of late, things pretty much suck. I’m in constant pain all the time. However, things are changing rapidly. My face feels very weird. It feels like it’s constantly draining. My nose and surrounding area constantly feels like something is moving around. I’m not crazy. But it just feels like something is in my skin. I feel it every day.
I went to see my oral surgeon who did the usual dexamethasone shots in my mouth. I am not sure at this point if they are helping, or working against me. Steroids are a dangerous game if an infection is in play. After getting shot up, it felt better, but the only thing that’s the downside of that is it feels like I ate a bee.
The antifungal seems to be working. As much as I can tell, it seems to help. It may play into the feelings that I am having in my face and head, so I am hopeful that it’s clearing up the obvious fungal infection I had. I’ve never seen my tongue that black. Probably the worst I’ve ever seen. It was definitely uncomfortable. I have another 10 days or so on it so I get I will see how it goes.
What’s strange with all this, is that ever since I started my SCIg, my body has just gone crazy. It feels like it’s doing a better job than the IV variant, but it seems like my body has really struggled overall with it. I can’t tell for sure, but it seems like my body is dealing with a ton of inflammation. My right foot keeps mysteriously swelling up for no reason. My face and neck feels really stiff. I should be worried, and telling the doctors, but I’ll be honest, I’m not. I’ve gotten really tired and disappointed in telling my doctors what is wrong. It most seems like what I talk about comes across to them as nothing.
My dermatologist finally took out the cysts that were extremely irritated and painful. I’m really glad that they are out. From what he could determine, they are lipoma’s. Not cysts. I took a look at them, they honestly looked exactly like the mucoceles that were removed awhile ago. For labs, I told him we need to test for everything under the sun. I really want and need to know what the fuck they are. It’s unexplainable that I’ve gone this long with all the facial issues with no real answers. Could this just be all a byproduct of my immune stuff? I don’t know anymore. It’s been exhausting having to drive people to help me figure all this out.
I saw my ENT yesterday. I had my wife come with to that appointment. It just feels better when she comes with. Another set of ears, someone who is just so understanding of my problems. In the past, my ENT has gone off of the deep end during my appointments where “things aren’t what they seem”. Which makes me look & feel like I’m making this all up. I can absolutely assure you that this is all real. Every single ER visit, lab result, and painful experience I’ve had to go through is being caused by something that has yet to be determined. He really didn’t offer much up this visit. I told him all the things that were going on, he just seemed rushed and and disinterested in listening. My biggest concern is what is the correlation to all the kidney stones, and why all of a sudden. There has to be something that can help pinpoint that. He went on to talk about wearing masks and oxygen/carbon dioxide. I’m really not sure where he is going with that. It made absolutely no sense. He rambled on about a few other things that I really didn’t pay attention to, ordered a CBC w/ Manual Diff and sent me on my way. I am really not sure if I should continue going to him. I mean he is a great dr. He has been immensely helpful in the past, however it just seems that he’s no longer invested in figuring out what’s wrong. He seems like a really smart guy, but I think he’s getting erritated and annoyed with me. It’s just a sense I get when I see him. “Oh god this guy again”. That’s the main reason I bring my wife with now. I know it’s unfair, and realistically unnecessary, but it makes me feel better that I have a second set of eyes and ears. The one thing that has been my experience in all of this is the amount of things talked about, and what is talked about.
The future is really up in the air for me at this point. I really don’t know what’s around the next corner. My biggest fear I guess is losing everything. I’ve worked so hard to get where I am today. I have sacrificed a great deal to be where I am. I would hate that all my efforts are just in vain. If you’ve read my blog, my life has not been easy by any means. Ever since I was a kid.
Mom would always be there for me no matter what. She would always take away the worry. Finding a way to calm and slow down what was going on. I seriously miss my mother every day. She is apart of my thoughts constantly. Even more so today. Let’s be real. What’s happened to me in the past 2 years would break anyone. No joke. It has been the most polar opposite experience. Going from being generally “ok” to almost dying in a hospital several times. In a matter of months. It happened that fast. No more than you would blink. I miss not having to deal with all this. Nobody, and I mean nobody should have to put u with, and deal with everything that I’ve had to go through. You have no idea how many times a day I think about “how things were”. If I had to pick 1 thing that is the worst in all of this, is the pain, and discomfort. Specifically in my face. The feeling that something is in there that nobody has yet to figure out. It’s hands down the worst experience ever. I swallow so much morphine. It’s rediculous. People don’t realize what it’s like to be “healthy” and how it’s taken for granted.
Today I have to get more labs done. As I stand here in the waiting room, Jesus shit has gone south. The overall mentality of people is astounding. Everyone is on autopilot. Just going through the motions. COVID has really cast a shroud of fear over everything, and everyone. I don’t see the carefree attitudes anymore. It’s like someone wrote the formula on how amazing things are on a whiteboard allowed people to see it, and just erased it. I see the frustration in people’s faces. I can relate. It’s felt like this for me for a long time. I can admit more than most, I’ve lost faith. My attitude as of late still sucks. I am having a hard time finding the positive in things for the most part.
As much as I want to write that things are better, and that I’m becoming healthy and free of whatever has been doing this to me. I can’t. I’m finding that it’s futile to hope to get better at this point. A small part of me thinks there is some underlying terminal condition yet to be found. I’ve gotten to the point of “whatever”. The medical system to this point has “gotten” me here, however it seems that the more I push, the more I try, the more I fail. At the end of the day, I want to get better. I want to get back to “normal” as best I can. But at this point I don’t think it’s obtainable anymore. I honestly feel like I am in a slow death spin. All I can do is sit here and experience it. No way off this ride. As scary as that sounds, that’s what I’ve started to settle on. Getting out of bed each day is getting harder for me. The level of pain that I am dealing with is slowly getting worse from what I can tell. There were some days where I would go a few days without, but now it’s a constant 4 hour thing. Whether it’s my face, or another fucking kidney stone.
I guess I could summarize this post as things fucking suck. I hate where things are going, yet I sort of just want this to be over at this point. One can only deal with this for an undetermined amount of time, and it feels like that’s where I am at… running out of time.
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