Sweet n Salty
Symptoms
So I took the packing out of my nose a little early because it was cutting into it a fair amount. The relief I felt was immediate and so gratifying. Plus, the doctor had shoved it so far back in my sinus that it was scratching the back of my throat and giving me a horrible sore throat! I waiting a while but I just had a minor runny nose, so it seemed safe. I joked it was like giving birth, because my nostril was so wide after I pulled it out, and every time I laughed or coughed, my nose would leak. But I was just so grateful to have that DONE with. And it was so nice to go to bed, being able to breathe out of both sides of my nose, and not having my nostril being rubbed raw. I slept so good. I slept so good that I didn’t notice the blood that began to leak out of my nose in the wee hours of the morning.
I finally came to around 6:30 when a huge hush of blood flooded into my pillow. I hoped it was just a blood clot. But then the blood kept coming. I felt sick to my stomach. It was starting all over again! This time I decided to call the doctor on call at my ENT’s office and see what I should do, because I did NOT want to go back to the hospital and have giant rhino rockets shoved up in there. They’re so painful that they have to keep you on pain meds the whole time they’re in. They’re unbearable otherwise. My ENT was the doctor on call and told me that if I could get there by 11:30, then he could see what he could do to help me. So Mom and I headed around around 9:30 and got there perfectly on time, maybe even a little early. Dr. Hagaen went into my nose with his special tools (camera, light, suction) and located several spot of the bleeding. He cauterized a few of them with a chemical swab and then packed some small swaths of surgical gauze packing into a crevice up in my sinus that seemed to be oozing blood from no specific source. He was fairly confident that would do it, but he also wondered out loud if I have some sort of bleeding disorder, because of all the bloody noses that I get. I guess that's something that I will have to check in to with my primary care doctor before she leaves. Anyway, what he did seemed to get the job done and I've been mildly okay since then.
I have been struggling with lethargy, fatigue, nauseousness, and generalized abdominal pain (that's nothing new, though) since then. And I do have to keep reminding myself: I was hemorrhaging, I lost a lot of blood between Tuesday night and Thursday night/morning. Plus, I also lost a lot of sleep those nights as well. So I was not only exhausted, but anemic as well. It was just a lot for my body to handle, and it's been a lot for me to recuperate. I've been trying to normalize my routine again - doing household chores, taking care of the dog, etc (I even made a batch of cake pops!). But then my vision got all spotty, and my lower back started cramping so bad that it hurt to even move my legs. I'm a little nervous... like is ignoring my symptoms bad?
I went to Urgent Care yesterday, because my nurse came to help me flush my port yesterday, and when she was taking my vitals, she was worried about me, because my temperature was up, and my blood pressure was in the toilet (which is weird because I've been having troubles with hypertension over the past year - quite the opposite of low BP). So I went to Urgent Care to get checked out, because I can normally identify what is going on with me, but I just can't quite piece together all these different symptoms I am having. Of course (and I expected this), the doctor said with my complicated medical history, and the amount of symptoms I'm having, he wanted me to go to the ER. So he got all this paperwork written up and documented and then sent me out the door to the ER. But I told my sister to just go the opposite direction and take me home. I was so tired and just wanted to lay in my bed. Besides, I can't help but think "What are they going to do for me there?" Given that I was just there a week ago, and when I told them one of my symptoms was pain and they gave me a Tylenol, I'm nervous that they're just going to look at me and make a big fuss over my potassium level (my baseline is higher than the average persons, but it's something the doctors always get concerned about) and they'll lock onto, even though I know - or I'm pretty sure, at least - that that's not the problem.
The UC doc suggested, in the paperwork that he was having me take with me to the ER, that I get a scan of my abdomen done, and he wanted all my electrolyte levels checked. He listed that he was concerned about my abdominal pain, and my lethargy, stating that I look "very ill". He said he wanted to rule out sepsis. Which I've kind of had, once before, and that was NOT a fun road to go down! But now that I'm writing this, I'm realizing that all my symptoms are possible symptoms of sepsis. And what if I'm being an idiot by not going to the hospital just to get checked out? But like I said in my last post, I don't want to be labeled as a drug addict, or a seeker, when I complain about pain. But I've been dealing with this pain for 10+ years now, so I know what pain medications work, and what doesn't work to help me deal with my pain. And Tylenol isn't going to do a damned thing for me!
I know that with a chronic, terminal illness, death is always going to be at my door. And I could answer the knock at any time. "No one gets out of this alive" and "today is all we're guaranteed" and all that AA stuff that my dad says to me when my brain starts to go places, and he's trying to ground me. Sad to say, it works, but I hate it after hearing it for the 30th time. But I know that I need to hear it sometimes. But all that doesn't mean that I can't be scared of dying, that I can't be angry about it, or feel cheated, or grieving, or even being averted to it, because aren't we all? It's human nature to want to avoid death at all costs, even at the actual, literal, very end of it all. There's always a part of us that doesn't want to do it. Darwinism and all that jazz. So yeah, I'm a little scared that this might me sepsis, and I'm ignoring it, and hoping to sleep it off, and rest, and hope that I'll be okay, and then I just won't be. 'Cause I ignored the infection, and now it's settled into my blood, into my organs, making itself home, and slowly taking me down, from the inside out.
I'm sighing because I don't know what to do. I HATE the ER and I HATE the hospital, but in my life, unfortunately, it's a necessary evil, whether I like it or not. I'm just so sick of going into a hospital where, in the long run, they can't help me. I'm going to die, in the end, one way or another. And the hospital never has a long term plan for treating my pain. That's the worst part of it all, is that I don't want to be in pain anymore. And there's nothing they can or will do to take it away, or to make it better. It's scary and frustrating and exhausting. Now I'm running my hands through my still-drying hair, because I really don't know what to do. I know my illness exhausts my family too, and takes a toll out on them too, and it's scary and frustrating and exhausting for them too. Sometimes I just feel like a massive 107 pound burden. And so I'm scared if I say I think I should go to the ER... because they're going to sigh because they're too tired. And then they have to decide who is going to be the one to take me, and stay with me. Because the medical system is such a crapshoot these days that someone always has to stay with me, to help fight for me, and to keep the doctors in line; to keep them from doing stupid shit. And that's a hard job.
I don't feel good. But I don't know what to do about it. I don't know how to treat all of these damn symptoms!
I finally came to around 6:30 when a huge hush of blood flooded into my pillow. I hoped it was just a blood clot. But then the blood kept coming. I felt sick to my stomach. It was starting all over again! This time I decided to call the doctor on call at my ENT’s office and see what I should do, because I did NOT want to go back to the hospital and have giant rhino rockets shoved up in there. They’re so painful that they have to keep you on pain meds the whole time they’re in. They’re unbearable otherwise. My ENT was the doctor on call and told me that if I could get there by 11:30, then he could see what he could do to help me. So Mom and I headed around around 9:30 and got there perfectly on time, maybe even a little early. Dr. Hagaen went into my nose with his special tools (camera, light, suction) and located several spot of the bleeding. He cauterized a few of them with a chemical swab and then packed some small swaths of surgical gauze packing into a crevice up in my sinus that seemed to be oozing blood from no specific source. He was fairly confident that would do it, but he also wondered out loud if I have some sort of bleeding disorder, because of all the bloody noses that I get. I guess that's something that I will have to check in to with my primary care doctor before she leaves. Anyway, what he did seemed to get the job done and I've been mildly okay since then.
I have been struggling with lethargy, fatigue, nauseousness, and generalized abdominal pain (that's nothing new, though) since then. And I do have to keep reminding myself: I was hemorrhaging, I lost a lot of blood between Tuesday night and Thursday night/morning. Plus, I also lost a lot of sleep those nights as well. So I was not only exhausted, but anemic as well. It was just a lot for my body to handle, and it's been a lot for me to recuperate. I've been trying to normalize my routine again - doing household chores, taking care of the dog, etc (I even made a batch of cake pops!). But then my vision got all spotty, and my lower back started cramping so bad that it hurt to even move my legs. I'm a little nervous... like is ignoring my symptoms bad?
I went to Urgent Care yesterday, because my nurse came to help me flush my port yesterday, and when she was taking my vitals, she was worried about me, because my temperature was up, and my blood pressure was in the toilet (which is weird because I've been having troubles with hypertension over the past year - quite the opposite of low BP). So I went to Urgent Care to get checked out, because I can normally identify what is going on with me, but I just can't quite piece together all these different symptoms I am having. Of course (and I expected this), the doctor said with my complicated medical history, and the amount of symptoms I'm having, he wanted me to go to the ER. So he got all this paperwork written up and documented and then sent me out the door to the ER. But I told my sister to just go the opposite direction and take me home. I was so tired and just wanted to lay in my bed. Besides, I can't help but think "What are they going to do for me there?" Given that I was just there a week ago, and when I told them one of my symptoms was pain and they gave me a Tylenol, I'm nervous that they're just going to look at me and make a big fuss over my potassium level (my baseline is higher than the average persons, but it's something the doctors always get concerned about) and they'll lock onto, even though I know - or I'm pretty sure, at least - that that's not the problem.
The UC doc suggested, in the paperwork that he was having me take with me to the ER, that I get a scan of my abdomen done, and he wanted all my electrolyte levels checked. He listed that he was concerned about my abdominal pain, and my lethargy, stating that I look "very ill". He said he wanted to rule out sepsis. Which I've kind of had, once before, and that was NOT a fun road to go down! But now that I'm writing this, I'm realizing that all my symptoms are possible symptoms of sepsis. And what if I'm being an idiot by not going to the hospital just to get checked out? But like I said in my last post, I don't want to be labeled as a drug addict, or a seeker, when I complain about pain. But I've been dealing with this pain for 10+ years now, so I know what pain medications work, and what doesn't work to help me deal with my pain. And Tylenol isn't going to do a damned thing for me!
I know that with a chronic, terminal illness, death is always going to be at my door. And I could answer the knock at any time. "No one gets out of this alive" and "today is all we're guaranteed" and all that AA stuff that my dad says to me when my brain starts to go places, and he's trying to ground me. Sad to say, it works, but I hate it after hearing it for the 30th time. But I know that I need to hear it sometimes. But all that doesn't mean that I can't be scared of dying, that I can't be angry about it, or feel cheated, or grieving, or even being averted to it, because aren't we all? It's human nature to want to avoid death at all costs, even at the actual, literal, very end of it all. There's always a part of us that doesn't want to do it. Darwinism and all that jazz. So yeah, I'm a little scared that this might me sepsis, and I'm ignoring it, and hoping to sleep it off, and rest, and hope that I'll be okay, and then I just won't be. 'Cause I ignored the infection, and now it's settled into my blood, into my organs, making itself home, and slowly taking me down, from the inside out.
I'm sighing because I don't know what to do. I HATE the ER and I HATE the hospital, but in my life, unfortunately, it's a necessary evil, whether I like it or not. I'm just so sick of going into a hospital where, in the long run, they can't help me. I'm going to die, in the end, one way or another. And the hospital never has a long term plan for treating my pain. That's the worst part of it all, is that I don't want to be in pain anymore. And there's nothing they can or will do to take it away, or to make it better. It's scary and frustrating and exhausting. Now I'm running my hands through my still-drying hair, because I really don't know what to do. I know my illness exhausts my family too, and takes a toll out on them too, and it's scary and frustrating and exhausting for them too. Sometimes I just feel like a massive 107 pound burden. And so I'm scared if I say I think I should go to the ER... because they're going to sigh because they're too tired. And then they have to decide who is going to be the one to take me, and stay with me. Because the medical system is such a crapshoot these days that someone always has to stay with me, to help fight for me, and to keep the doctors in line; to keep them from doing stupid shit. And that's a hard job.
I don't feel good. But I don't know what to do about it. I don't know how to treat all of these damn symptoms!