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 Posted: Tue Nov 06, 2018 11:45 am
So, uh, hi, everyone!
Maybe you didn't notice my... extended absence, but I've been gone for... a while now.
Since the guild is my Gaia family, though, I figured you all deserved an explanation in the event you HAD noticed my absence.
Cap'n knows a bit, since we're in touch outside the guild, but not everything (I didn't have the energy to explain it all, to be honest, and had my beau reply for me in the interim).
Basically, I've been sick for something like a month now.
I thought I'd get better, thought it was just a reaction to foods or compounding colds or something, but, well, it wasn't.
I've just returned from a near week long stay at the hospital after my beau got fed up and dragged me away to the ER.
(I'd have been kicking and screaming the whole way if I'd had the energy, but as it was, he basically had to carry me...)
As it turns out, I suffer from an IBD (inflammatory bowel disease), and, well, my stubbornness let it get... REALLY bad, and I lost a lot of blood and required a lot of recovery time, I even had to have a transfusion near the beginning of my stay.
They have me on meds right now, and I'm feeling better, but, well, regardless of whether they decide it's ulcerative colitis or Krohn's, I've got a lifetime of managing ahead of me. =w=;
I'm just trying to find normal again right now, so I'm glad to be back in the guild, honestly, haha~
TL;DR: I have UC or Krohn's and was hospitalized, but I'm finally home and glad to see you all again!
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Posted: Tue Nov 06, 2018 12:07 pm
Queen Spazzy So, uh, hi, everyone!
Maybe you didn't notice my... extended absence, but I've been gone for... a while now.
Since the guild is my Gaia family, though, I figured you all deserved an explanation in the event you HAD noticed my absence.
Cap'n knows a bit, since we're in touch outside the guild, but not everything (I didn't have the energy to explain it all, to be honest, and had my beau reply for me in the interim).
Basically, I've been sick for something like a month now.
I thought I'd get better, thought it was just a reaction to foods or compounding colds or something, but, well, it wasn't.
I've just returned from a near week long stay at the hospital after my beau got fed up and dragged me away to the ER.
(I'd have been kicking and screaming the whole way if I'd had the energy, but as it was, he basically had to carry me...)
As it turns out, I suffer from an IBD (inflammatory bowel disease), and, well, my stubbornness let it get... REALLY bad, and I lost a lot of blood and required a lot of recovery time, I even had to have a transfusion near the beginning of my stay.
They have me on meds right now, and I'm feeling better, but, well, regardless of whether they decide it's ulcerative colitis or Krohn's, I've got a lifetime of managing ahead of me. =w=;
I'm just trying to find normal again right now, so I'm glad to be back in the guild, honestly, haha~
TL;DR: I have UC or Krohn's and was hospitalized, but I'm finally home and glad to see you all again! Soooo happy you're back and doing better again!!! (The Gaia emojis disappeared for me) :heart ...I just knew that what you were experiencing was not normal, and it seems that Cody did as well. I've known you for years, and you've been sick before, but nothing compared to this time! You had a degree of fatigue, listlessness and apathy that just wasn't like you, and I could tell from our conversations. I was going to text tomorrow! (Dropped phone in pool, and I think you would be very proud of me Brandy that I did what all the internet sites say are two important steps), and so far so good. As for your diagnosis...that's terrible. I won't give you the whole "You're strong, you can do it" (although I know you can!), but I'm here if you need me to support you through your journey of feeling normal again. And this guild is NOT the same without you. More crickets for sure lol. Welcome back home!! smile
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Posted: Tue Nov 06, 2018 12:23 pm
Blind Blindness Soooo happy you're back and doing better again!!! (The Gaia emojis disappeared for me) :heart ...I just knew that what you were experiencing was not normal, and it seems that Cody did as well. I've known you for years, and you've been sick before, but nothing compared to this time! You had a degree of fatigue, listlessness and apathy that just wasn't like you, and I could tell from our conversations. I was going to text tomorrow! (Dropped phone in pool, and I think you would be very proud of me Brandy that I did what all the internet sites say are two important steps), and so far so good. As for your diagnosis...that's terrible. I won't give you the whole "You're strong, you can do it" (although I know you can!), but I'm here if you need me to support you through your journey of feeling normal again. And this guild is NOT the same without you. More crickets for sure lol. Welcome back home!! smile Aha, thank you for the warm welcome~
I had actually just texted you before I posted this thread, suppose I oughtn't expect a reply today. ;p (It was just me saying I got discharged and came home, though.)
I was trying so hard to be normal, because it was so overwhelming thinking about the cost of NOT being normal. I was pretty clearly failing VERY hard at that. >>;
We chose a specific network of hospitals, though, and they're working really hard with and for me so that I can get the care I need, but it's still overwhelming, we had to request an alternate med because I just couldn't afford the one they wanted for me ($400 for a single month's supply...).
I think I'm honestly more overwhelmed by the cost of my diagnosis than the diagnosis itself, because they've come a long way in being able to achieve remission and reduce flareups.
(Interestingly enough, I've a friend from FFXIV who was diagnosed with UC almost a year exactly before me, so he's been giving us tips and advice; it's actually really reassuring to have someone else that knows what it's like to talk with about it. >>; )
I'm supposed to be enrolled in a study through the hospital, though, which will cover med costs, so that'll be interesting (FOR SCIENCE!), and they said if I ever decide I want to switch out of the study I can do so at any time.
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Posted: Tue Nov 06, 2018 12:47 pm
Queen Spazzy Blind Blindness Soooo happy you're back and doing better again!!! (The Gaia emojis disappeared for me) :heart ...I just knew that what you were experiencing was not normal, and it seems that Cody did as well. I've known you for years, and you've been sick before, but nothing compared to this time! You had a degree of fatigue, listlessness and apathy that just wasn't like you, and I could tell from our conversations. I was going to text tomorrow! (Dropped phone in pool, and I think you would be very proud of me Brandy that I did what all the internet sites say are two important steps), and so far so good. As for your diagnosis...that's terrible. I won't give you the whole "You're strong, you can do it" (although I know you can!), but I'm here if you need me to support you through your journey of feeling normal again. And this guild is NOT the same without you. More crickets for sure lol. Welcome back home!! smile Aha, thank you for the warm welcome~
I had actually just texted you before I posted this thread, suppose I oughtn't expect a reply today. ;p (It was just me saying I got discharged and came home, though.)
I was trying so hard to be normal, because it was so overwhelming thinking about the cost of NOT being normal. I was pretty clearly failing VERY hard at that. >>;
We chose a specific network of hospitals, though, and they're working really hard with and for me so that I can get the care I need, but it's still overwhelming, we had to request an alternate med because I just couldn't afford the one they wanted for me ($400 for a single month's supply...).
I think I'm honestly more overwhelmed by the cost of my diagnosis than the diagnosis itself, because they've come a long way in being able to achieve remission and reduce flareups.
(Interestingly enough, I've a friend from FFXIV who was diagnosed with UC almost a year exactly before me, so he's been giving us tips and advice; it's actually really reassuring to have someone else that knows what it's like to talk with about it. >>; )
I'm supposed to be enrolled in a study through the hospital, though, which will cover med costs, so that'll be interesting (FOR SCIENCE!), and they said if I ever decide I want to switch out of the study I can do so at any time. Wow, thank you for all that information! I can tell you're feeling better just based on how you write. I know you that well lol Lol yes, that's right! You can expect a text from me later tonight or tomorrow. I had a feeling you would text to let me know. We're too close for you not to :p It's an understandable reaction. You're feeling things you never felt before, and your defense mechanism is to just try to will it away. Hard to imagine not being your normal self and wondering why that is and feeling worried or embarrassed. And thinking about what the consequences that would entail to not being your normal self and how you could possibly manage that. Easiest solution at the time seems to be to ride through the storm and minimize the problems. But as you can clearly tell, a sick body often waits for no one's permission to wreak havoc. I'm glad you have someone though that you can talk to. Support groups, support people, that's what many of us need. Dude, I totally understand though. This is how people go broke, especially people without health insurance. We both know how to do basic math. $400 times 12 = $4800 (I can do that in my head), which basically means a s**t ton of money. So glad that they're working with you! That experimental trial sounds fascinating. Let me know how it goes. When does the trial start, anyway? And yes, the great thing about informed consent...they must explain to you that your participation is voluntary and that you may withdraw at any time. Among other things.
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Posted: Tue Nov 06, 2018 1:00 pm
Aww man, I sure hope that trial you'll be doing will help with your condition. Good to see you back and feeling better, Spazzy-chan! I finally went to Disneyland for the first time last month with some family members for four different days. It was pretty neat over all. I hope to go again someday. ^_^*
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Posted: Tue Nov 06, 2018 1:21 pm
One of the first big signs that I was truly unwell for my beau was that I wasn't playing games or using the computer anymore because I was just too drained for even something as little as that. >>;
All the professionals involved in my care have been really helpful and supportive so far, honestly, which is nice, I was truly expecting things to be more complicated than they have been. They want to set me up with free/low cost consultations with people in the hospital just to make sure I'm not having to go it alone, which is pretty reassuring.
They said I should be able to enroll in the trial once I've done my four week follow-up. I'll try to keep you in the loop on it, it's going to be a completely new experience for me, but I figured it was worth a shot, and was really glad they offered me that option, honestly, because, yeah, we're doing good to afford the cheaper option they gave me. (Luckily I also have a good family support system, even though I hate relying on my mum and my beau's parents like this.) Who knows, I may decide to just STICK with the study if it goes well. I really hope so, too! Either way, it's certainly better than nothing, so I'm willing to give it a shot.
Ohh, Disneyland? Wow, that sounds like a fantastic time! I've never been myself, but my friends have all said it's a fun time.
I've a personal endeavor to hopefully one day visit amusement parks all over the US, I've managed technically three states so far, maybe once I'm feeling better I might add a fourth to the list next year!
(Or maybe another country entirely, I've heard tell of a good one up in Canada somewhere, and I've always wanted to visit Canada anyway, haha~)
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Posted: Tue Nov 06, 2018 1:30 pm
Queen Spazzy I really hope so, too! Either way, it's certainly better than nothing, so I'm willing to give it a shot.
Ohh, Disneyland? Wow, that sounds like a fantastic time! I've never been myself, but my friends have all said it's a fun time.
I've a personal endeavor to hopefully one day visit amusement parks all over the US, I've managed technically three states so far, maybe once I'm feeling better I might add a fourth to the list next year!
(Or maybe another country entirely, I've heard tell of a good one up in Canada somewhere, and I've always wanted to visit Canada anyway, haha~)
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