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Thread: Personal Woes and Advice 6
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2020-09-12, 01:08 AM (ISO 8601)
- Join Date
- Oct 2015
- Location
- Berlin
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2020-09-12, 03:57 AM (ISO 8601)
- Join Date
- May 2007
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Re: Personal Woes and Advice 6
Eh.. That resonates..i remember the days of anxiety between the biopsy and finding out that what I have is sarcoidosis instead of lymphoma...
Quite the emotional rollercoaster
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2020-09-12, 10:47 AM (ISO 8601)
- Join Date
- Feb 2005
- Location
- Santa Barbara, CA
- Gender
Re: Personal Woes and Advice 6
well, glad it isn't cancer.....but ouch that still sucks. Best of luck on the fungi and the hospital/employment/insurance bureaucracy to come.
Perhaps a counter war on Fungi Kingdom is in order?
Eat lots of mushrooms, marmite/vegemite (if you can't have the beer parts....eat the rest), blue cheese and the like?
And yadda yadda extra care in hospitals because 2020...you know the drill.
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2020-09-12, 11:29 AM (ISO 8601)
- Join Date
- Sep 2013
Re: Personal Woes and Advice 6
While it sucks to hear that you are dealing with a severe lung infection, I am glad to hear that it isn't the hydra that is cancer. Best of luck.
I wonder if the issue is work environment? Just thinking of the lung damage that one can get in trade work that would weaken patches of the your lung tissue. I know that the masks I often had in my brief stint as a laborer were insufficient for the dust I was dealing with. Often had a grey beard and grit in my teeth after wearing a mask all day (and the beard wasn't causing issue with the mask sealing at the time)
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2020-09-12, 11:49 PM (ISO 8601)
- Join Date
- Jun 2010
Re: Personal Woes and Advice 6
Right now I want to die. Find some way to end things and wait until I am alone. I have tried before. I know tomorrow this will have receded. I will be back to seeming happy. Presenting a happy face to my family. A part of me finds the thought sickening. Another part finds the idea relieving. And another part gets analytical and doesn't know what to feel. Truthfully. Finding something to watch would really help but I am really focused on one thing right now and don't want to spend money to watch it and can't just refocus. This is a tangent. I feel a little calmer now. I just don't know what to say.
DEGENERATION 86: Copy this into your sig and subtract 1 from the degeneration when you first see it. This is an antisocial experiment.
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2020-09-12, 11:52 PM (ISO 8601)
- Join Date
- Dec 2015
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2020-09-13, 12:19 AM (ISO 8601)
- Join Date
- Jun 2010
Re: Personal Woes and Advice 6
I'm feeling somewhat better now. And being at home with family means I am not at any immediate risk. Trying to think of something positive to say but it is hard because I doubt I will actually call a hotline tomorrow so I can't really say that. And the comments on why I don't think I will hurt myself are simultaneously positive but still depressing. And I don't think I will hurt myself tomorrow but annoyingly I have a hard time saying I won't hurt myself. This isn't reassuring people much and trying to convince people that the previous post is not as serious as it seems is foolish. But I will be stay safe. Thank you.
DEGENERATION 86: Copy this into your sig and subtract 1 from the degeneration when you first see it. This is an antisocial experiment.
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2020-09-13, 12:22 AM (ISO 8601)
- Join Date
- Dec 2015
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2020-09-14, 02:41 PM (ISO 8601)
- Join Date
- Dec 2015
- Location
- San Francisco Bay area
- Gender
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2020-10-17, 11:16 PM (ISO 8601)
- Join Date
- Apr 2004
Re: Personal Woes and Advice 6
Mixed feelings about putting this out there, but why not, right?
So, on New Year's Eve, I got some disturbing news: a recent routine blood panel showed my creatinine levels were really high (they should be roughly 1.0, I was at 4.3). For those of you that don't know, this is an indication that your kidneys are having a very bad time. By April, my kidneys were essentially shot (I can still pee, but they're basically not doing any filtering anymore). I'm still in the midst of going through test after test after test after test to see if I'm a viable candidate for a transplant, which is exhausting in and of itself.
But even if everything's perfect, it could take years for a compatible kidney to become available. So in the meantime, I have to, three times a week, spend three and a half hours sitting in a chair while a machine literally sucks my blood out to clean it and put it back in. (Oh, and it means that I have to get stuck with two needles every time, which is great for someone who hates needles.)
And unlike most dialysis patients, I don't have problems with high blood pressure. In fact, half the time, during my treatment by blood pressure plummets and I deal with a combination of severe lightheadedness (to the point where it's somehow painful), a feeling of overheating, and panic attacks. They have to literally put me on oxygen to help me out.
I dread and resent it every time, but there's not a lot to be done. I've taken to bringing a laptop and playing games like Heroes of Might and Magic or Monkey Island to sort of distract myself. (I actually can't move my arms very much, because one of them has all the tubes in it and the other has to be kept straight most of the time to monitor my blood pressure.)
But that's all just the short term. In the longer term, I'm trying to lose weight. I'm basically right at the line of "too fat to go on the transplant list." I'm... fairly confident I can lose enough weight in the next few months to get down to the "less risky" category. When I put in the effort, I get good results with weight loss. But it's still a little scary, since there's always "but what if I don't pull it off" in the back of my head. The last thing I want is ANOTHER surgery to cut out half my stomach or something. I don't care what the surgeon says about how "most people who get it wish they'd done it sooner," it sounds like a horrible idea.
Oh, and that blood pressure issue? Not confined to the dialysis session itself. Often, for the rest of the day, I'm basically useless. I'll have bouts of lightheadedness, standing up or bending over can lead to a wave of dizziness, and I often just can't stay awake. This isn't exactly surprising. I lose about 3 kg (6.6 lbs) of weight every single session, and that's all coming straight out of my bloodstream.
Thanks to all of this I've lost my job and disability won't start paying out until December (my kidneys failed in April, but I'm basically being punished for trying to continue working because they calculate from "last day worked" not "date of diagnosis"). The only reason my fiance and I aren't totally boned is because he, miraculously, got a good-paying job in his field like two months before all of this hit the fan.
And on top of it all, I think, at 38, I'm the youngest patient in the clinic by a solid 20 years or more.
So, thanks 2020. Great freaking year.
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2020-10-18, 02:10 AM (ISO 8601)
- Join Date
- May 2018
- Location
- Spokane, WA
- Gender
Re: Personal Woes and Advice 6
I remember how the good, nice, kind people of the forums, told me to seek help. And then how I was homeless, except, nothing got better. Nobody wanted to treat a tenant who, like, minded her own biz or we thought we were minding our own biz? And by the way, to the A+ human being who talked to me thru PMs, thank you. Most people we meet don't find us worth anything. I'm nothing. A nobody.
Some tips for socially anxious/terrified/survivors:
1. When bullies escalate a situation into violence, forget tough talk, altho say it as you make *physical distance.* They may try to even flip the script, and yell you're hurting them which you didn't, i don't know the answer to that one except, to be dramatic back. When they lie to hurt you, you can lie back.
2. Listen and notice the tones of voice of people around you.
3. Don't stay in areas of a room that are blocked by objects or corners, unless you're with a safe person, however realize this puts you both at some level of risk so be alert.
4. My friends all told me to get sleep, cease talking to like dead ladies, and to cease doing *anything* i'm told.
5. I have a career/hobby writing, which was put on hold, would love to get back into collaborative writing.
Aside from that, i have woes, except the lesson is over and over that i am too trusting and naive. so instead of begging for help, i'd love, to help other people here with advice. My background for this kinda thing, is attempting to like, give suicidal people hope. I donated to somebody i just met, and we became close-ish, and went thru homeless adventures together. I only wanna give help people *wanted* tho, only if people ask, i don't know. anyway, thread tax:
Anybody that cares to give advice: I am shunned from normal society because of a disability, i applied to Goodwill several times, did unpaid work at the home, and the previous home. I'd love to be a housekeeper. I'd also love to learn conflict avoidance steps, since due to my upbringing as a poor lady nobody cares about, who people... aggress... with their bodies, like, dudez bigger than me (i'm a tall girl but these dudez had muscles) would slap me, shove me in the garbage, and more. Don't ask unless you really wanna know. So:
How do you avoid conflict when people aren't willing to stop conflicting with you, and for your safety, you have to avoid destructive influences like mockers and assaulters?"What did she say? What did he say? You don't listen 'cause you know everything." By Ariana Grande
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2020-10-19, 02:49 AM (ISO 8601)
- Join Date
- Jun 2008
Re: Personal Woes and Advice 6
Suddenly realizing that your body is failing you is a shocking realization. I know because I have been there. So you have my sympathy.
But you also have my respect: Instead of giving up, you devise a plan to improve your odds. That is not a small feat!
I don't know how much you know about losing wait, but there is something most people do wrong: they assume the first days of changing your habits and additional work are permanent, but they aren't. You get used to it rather quickly if you can keep it up from the start.
On a personal note: counting calories for a few days really helped me to get a perspective.
A little exerxise, like walking, might also help you with that AND your blood pressure.
To conclude: I know it sucks. It does. Being unusually young seems bad, but it also means that you have an excellent spot on the waiting list once you have lost your weight. And you have support and a battle plan to turn this mess into a temporary thing. Commence the fight.What can change the nature of a man?
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2020-10-19, 11:29 AM (ISO 8601)
- Join Date
- Apr 2004
Re: Personal Woes and Advice 6
I've gotten back on Weight Watchers, which worked really well awhile back. Sticking t it didn't survive moving to NYC, but now that I've got stronger motivation (and enough money to afford the dues), tracking helps with keeping the habits going, since I get much more immediate feedback when I slip up. But it's tricky since I have to get enough, but not too much phosphorus and potassium. Which means a lot of healthy options like lentils or quinoa are things I can't have very often.
Exercise doesn't seem to be helping with the blood pressure much, but I'm still trying to keep up with it.
Honestly, it's more annoying than anything. Though my exact feelings on the matter vary from day to day.
The good news is that, apart from my weight, all the tests have been coming back with a solid thumbs up for transplant readiness. Apparently I'm in like the 94th percentile of viability, which is encouraging.
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2020-10-19, 04:58 PM (ISO 8601)
- Join Date
- Jul 2007
- Location
- France
- Gender
Re: Personal Woes and Advice 6
@Grey Watcher
Not sure if this helps, but my dad (a nephrologist) suggests you bring something you love but can't normally eat and eat it at the beginning of your dialysis. Since your blood is getting filtered, it's the safest time to treat yourself, plus it can make you look forward to it a bit which is nice. And if you're going to be on a diet, it may help you not break it?
This really sucks and I'm sorry about all of this. For what it's worth, my husband has diabetes and anytime he's hard something pretty bad happening (amputations, going blind, organs failing...) all the doctors and nurse keep talking about how yound he is for any of this to be happening, which is annoying the first time but worse the thousands. So we feel your pain (he's a few years younger than you, but things have been going bad since he was in his twenties so we've heard a LOT of it).
I hope you can get a transplant and that things work out for you. Sorry disability is so stupid :(
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2020-10-20, 08:57 AM (ISO 8601)
- Join Date
- Apr 2004
Re: Personal Woes and Advice 6
Maybe. I've been loath to eat or drink during dialysis because they weigh me before and after, and I don't want to screw with that.
Sorry to hear about what your husband is going through. That sounds absolutely brutal.
And yeah, "wow, you're so young to be going through this" goes from dull to grating in short order.
I had a friend who expressed interest in donating, but I'm not sure if he changed his mind. We didn't exactly have a falling out, but I think I pissed him off and I don't know where we stand now. My mom said she'd donate, but putting a 75 year old kidney into a 38 year old isn't a good idea, since the goal is to get me something that'll last me the rest of my life.
I don't really know how to put it out there that I need one, especially since I don't use social media anymore. It's not like I can just individually ask people. That's too much to ask.
A donor would be ideal, though, since it'd get all of this over with sooner. But that seems unlikely.
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2020-10-29, 01:36 AM (ISO 8601)
- Join Date
- Apr 2011
- Gender
Re: Personal Woes and Advice 6
It's nice to be vindicated I guess but I wanted my friend back. Especially since at one point it seemed like we could have been more than that. I keep thinking if I had run into her earlier a lot of this could have been avoided. But right now she still doesn't want to talk things over.
But that's been in the background. Unfortunately some seemingly petty gripes exploded over the past weekend at work. As much as I would rather not see things go down this way there are things I do not tolerate and I would rather be shorthanded rather than have someone who clearly does not want to be here / is negatively impacting everyone else's performance.Last edited by darkdragoon; 2020-10-29 at 01:38 AM.
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2020-11-03, 07:11 AM (ISO 8601)
- Join Date
- Dec 2015
Re: Personal Woes and Advice 6
I'm getting upset about this forum because there are some members in this forum that they have a hard time understanding my clarification even I explained to them multiple times which was a very clear explanation. I need a break from this forum.
It's time to get my Magikarp on!
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2020-11-04, 02:25 PM (ISO 8601)
- Join Date
- Dec 2010
- Location
- Canada
- Gender
Re: Personal Woes and Advice 6
So I have wanted to share this properly for a little while (it’s also personal health-related). This story is mostly dealt with, but I wanted to share it in a way that was at least semi-public. My apologies if it comes across as self-indulgent, but it’s been weighing on me.
Back in May, I began to have pains in my lower right calf. This was about 6 weeks into the UK COVID lockdown (I am Canadian, teaching English here for 2 years with a temporary work visa, but I won’t even get into how homesick I am or I’ll be here all night). I had recently begun exercising as a way to keep some of the lockdown weight off, and initially I thought that I had not stretched properly after running.
Then, a few days later, I started having trouble breathing. It was subtle at first: I had a tightness in my chest and I ran out of breath more easily. Then it started getting worse. I became unable to lie down and still breathe normally. Walking became increasingly difficult, and I was struggling to do anything without agonizing pain.
I ended up travelling to a hospital, afraid that I had come down with COVID-19 as I had lost my sense of smell and taste about a week before for a few days. They did some tests - xrays, CT angiograms, the works - before determining that I did not, in fact, have coronavirus. Instead, I had some minor clotting in my lungs. Cause unsure. They sent me off on my way within a few hours with prescriptions for blood thinners and painkillers, and I thought that would be the end of it.
By the next morning the pain had increased. This was 10/10 pain, the absolute worst that I have ever experienced. My flatmates had to come and check on me because the only sounds I was making were screams. We immediately called an ambulance, who took me to a different hospital. They dosed me with as much morphine as they could legally administer and let me drift off for an entire afternoon. By the time I came to, I was hooked up to a steady IV drip, was being given oxygen, and was on a steady codeine and antibiotics diet.
It turns out that I had severe blood clots in both lungs (caused by deep vein thrombosis, or DVT), as well as a staff infection in my lungs. The hospital staff were shocked that I had been discharged from the first place. I ended up staying there for three days and four nights. Now I know that doesn’t seem like a long time, but when you’re a physically healthy 25 year old male with absolutely zero prior problems, you get a bit freaked out when your lungs just stop working practically overnight.
Right now, the running theory is that I had a strain of COVID 19, which then allowed the infection to enter into my lungs and made me vulnerable to DVT. But the hospital doesn’t know: months of tests later, and they are only able to rule out lung cancer and a few other more common ailments. I still take daily blood thinners, and although my prescription has run out, I still regularly take extra strength painkillers to avoid feeling pain in my chest. I am weaker now, and I worry that I will never reach the same point that I was before all of this.
But the thing that is really frightening me? When the doctors at the second hospital discharged me, they were frank about the long term consequences. What I had would not go away quickly, and with every year that passed, the chances of the blood clots returning in full force would increase. To have DVT and blood clots at my age was rare, but they felt confident enough to tell me to expect increasing complications into middle age. On average, my life expectancy has now been shortened by about 10 years. I know that it’s an average number and a lot of the problems can be offset by taking care of myself, but that number is still burning a hole in my brain. That I might die 10 years early because of anomalous clots in my lungs keeps me up at night.Spoiler: Stuff I'm Working OnSmall Justice
An ongoing web serial about politics, vengeance, and miniature lizards. Go check it out!
"Life is to be lived, not controlled; and humanity is won by continuing to play in the face of certain defeat."
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2020-11-04, 02:39 PM (ISO 8601)
- Join Date
- Oct 2010
- Gender
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2020-11-06, 12:00 PM (ISO 8601)
- Join Date
- Jul 2007
- Location
- France
- Gender
Re: Personal Woes and Advice 6
Unfortunately my husband died this morning. As it was a non-covid death, I have been able to visit him in the hospital and I guess say my goodbyes. Today I was supposed to bring him the Mandalorian and Discovery episodes, as the hospital has no Internet. I watched them with him, even though he'd been dead for a few hours at that point.
It's very weird because it sounds like a preposterous thing to say, but after hours of crying and wondering how it could have happened and so on, spending two hours watchin shows with him was familiar and comforting, and I felt like I kept to my word even though it wasn't in the way either of us could have hoped.
I am calm right now but I know it will be breakdown after breakdown whenever I see something that reminds me of him, which will be a lot of things, especially as we live(d) together and all of his stuff is around. His computer is stilll on from when he was rushed to the hospital on the 2nd of November, and I really don't want to ever turn it off, even though it makes no sense to me.
I've been looking at grief and losing a spouse in your thirties and these kind of things. The timing of course sucks, which the lockdown back in place my family can't easily visit or vice versa. I don't know how I'd deal with company though. At the hospital everyone was going out of their way to be nice and apologetic to me, even touching me (not in a creepy way; but come on, hospital during covid!) and it was extremely uncomfortable, it made me feel like I was supposed to help them feel better and couldn't be left to grieve on my own. Having people over, unless they were friends who acted normal, would probably be similar.
I'm home now and tired, physically and emotionally. Tomorrow I'm sorting things with the funeral people, lots of paperwork but I'll get his death certificate, which I'll be needing.
I feel like I need to live my life better. He was so supportive of me and I let him down. There is no sense in blaming myself now but I want to reach my potential and do it for him. I don't know where to start, but I don't have to start right away so I should be fine.
Love to all of you and thank you if you read the whole thing.
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2020-11-06, 12:20 PM (ISO 8601)
- Join Date
- Aug 2010
- Location
- The Primus Imperium
- Gender
Re: Personal Woes and Advice 6
Christ.
I'm so sorry, Lissou.Hate me if you want. But that's your issue to fix, not mine.
Primal ego vos, estis ex nihilo.
When Gods Go To War comes out March 8th
Discord: HalfTangible
Extended Sig
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2020-11-06, 12:46 PM (ISO 8601)
- Join Date
- Oct 2010
- Gender
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2020-11-06, 03:41 PM (ISO 8601)
- Join Date
- May 2007
- Gender
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2020-11-06, 03:44 PM (ISO 8601)
- Join Date
- Feb 2005
- Location
- Santa Barbara, CA
- Gender
Re: Personal Woes and Advice 6
lissou
Bloody hell....that's tough.
For whatever good words on the internet can do I'm so very sorry for your loss.
Honestly the wanting to watch a video or three with him makes a ton of sense and probably one of the best things you could have done. He seemed to have been deeply in pain and now he is at peace..don't forget that you'll need to take care of yourself, even if you don't feel like it. Pm if you want of course but no pressure. Hell that should probably be your mantra for a bit. Let yourself grieve however you need for a while big or small (and small can be just as tough)...but best wishes in trying times.
**Passes internet cookies and whiskey**
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2020-11-06, 06:41 PM (ISO 8601)
- Join Date
- Apr 2004
Re: Personal Woes and Advice 6
I'm really sad to hear about this.
I understand where the people at the hospital were coming from, I guess. But I also understand where you're coming from, too. Finding the right balance between supportive and providing space is difficult.
For what little it's worth, I don't think you let him down. You were there for him when he needed you most, and that's what really matters.
I can't claim to understand what you're going through on any real level, but if there's anything I can do, don't hesitate to reach out to me.
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2020-11-09, 01:27 AM (ISO 8601)
- Join Date
- Jul 2007
- Location
- France
- Gender
Re: Personal Woes and Advice 6
Thank you, everyone. It helps to have support. I'm trying to take care of myself right now as the funeral arrangements have been made and now I just need to wait for his urn to get back to me. I go between emotional, numb, and forgetting he's not just around the corner, which I think are all normal.
My mother spent the day with me yesterday, which she could do for bereavement reasons, but won't be able to do again (she's from another city and travel is restricted because of the lockdown). It was nice to see her, and she helped me clean my place and get groceries.
Last night I had a dream about Sean. We talked about how we both knew it was a dream but I might as well enjoy his presence. It felt nice to be close to him even though it was all in my head.
I'll continue to take care of myself and the pets, who force me to get up every morning to feed them at least :) If I need to talk I'll happy take you guys up on your offers.
Thanks again!
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2020-11-12, 08:16 PM (ISO 8601)
- Join Date
- Dec 2017
Re: Personal Woes and Advice 6
You chose to support him in return. That would have been the right thing to do anyway, but it was even more so now, knowing for certain which goal had limited time to be accomplished in.
I’m glad you managed to get to your homeland in time. I remember his homeland wasn’t good to either of you. Though home was of course wherever your love is.
Before this year I wouldn’t’ve believed in the return of spirits in dreams but...well...2020 changed everything—I’m struggling with a recent spirit’s visit myself. Your husband, he knows where his beacon and his love is.
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2020-11-14, 01:40 AM (ISO 8601)
- Join Date
- Nov 2019
- Location
- Laniakea Supercluster
- Gender
Re: Personal Woes and Advice 6
I messed up. I wanted to join a cool Homestuck rp server. I joined. I accidentally misspoke. It sounded bad. I was banned, but at first I didn't realize it, or why. Then I made an alt and rejoined to ask why. I got the answer. It seemed like a misunderstanding. I was banned again for ban evasion. It only hit me until later that what I said exactly. I will not put it here because the topic would get me banned here.
When I realized what I did, I panicked. I went full paranoid. I deleted my tumblr. I deleted all my discord accounts to prevent being traced or detected or hunted.
I can't even sleep. I am scared. I am depressed. This is not the first time this has happened to me, though it is arguably the worst.
I don't knpw what to do.
This place seemed like the right spot to write this.
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2020-11-14, 12:19 PM (ISO 8601)
- Join Date
- Nov 2019
- Location
- Laniakea Supercluster
- Gender
Re: Personal Woes and Advice 6
Ok, I'm doing a bit better now.
I don't really know what came over me, I just freaked out over something I said, was stricken with regret, and went into a full panic-damage-control-self-preservation mode. I just deleted a lot of stuff, and that was either very stupid or very smart. I have not seen myself act this intensely like this. I can get overwhelmed and just try to nope out of stuff, but never before have I felt compelled to burn everything down as I did.
Now I am a bit calmer, but I still don't know what to do.
I read that the best thing to do when you make a mistake and have issues with regret is to acknowledge your feelings but to use it to learn and move on.
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2020-11-14, 10:50 PM (ISO 8601)
- Join Date
- Nov 2019
- Location
- Laniakea Supercluster
- Gender
Re: Personal Woes and Advice 6
update: I reactivated my account, I am doing much better.
Thanks for providing me a place to just share all of this.