I wish my life felt worth fighting for but it doesn't and it's not.
I'm not suicidal or anything just don't have any drive left in me to fight for myself and my doctor says there is nothing wrong with me that they can find and that doctors aren't good at finding rare stuff and can only try to treat symptoms but that I don't have anything dangerous so I don't have to worry about dying but I am not worried about dying I am worried about having to be so sick and get worse the rest of my life. Like how is it ok and not dangerous to live your life in bed and hardly able to move or eat?
Anyway I have changed my outlook for the most part from I want to die to I want get better but it doesn't look like either will ever be an option for me so I can't help but feel hopeless, helpless, and worthless.
I'm in agony, absolute agony. I don't know if I can keep getting through the days like this with not a single bit of hope in sight. No help from anywhere.
I have my CT follow up on tuesday but I already read it online and it showed nothing he can deal with.
Just cysts and lesions on my ovaries and fluid in the area. He's not that kind of doctor and that's probably not what's causing all these problems I'm having anyway because the problems are clearly inside my intestines. CLEARLY. The stuff I see come out of me, oh boy.
That guy did say I probably needed to see a gastroenterologist because he's just a surgeon and doesn't deal with those things. He didn't even know what gilbert's syndrome was and I had to explain it to him! He also only does upper digestive, stomach and esophagus and nothing showed in those areas so it's got to be something lower down.
The pain is getting worse and different every day, every minute is feeling harder than the one before. I've never had anything like this in my life. I can't take it but I'm too poor to do anything about it and too sick and weak to try to not be poor.
I called gastros around here last year when this was all starting and they start at $250 per visit, no uninsured discounts, no financial assistance programs and you have to prepay.
So what are people with serious gut problems supposed to do?! Die I guess because money means more to them than anything else. They probably don't even want to help people get well they just want their money.
My mom says they should just pay for it, but all they have is social security, and they pay all the house and car bills with that. They're so old they shouldn't have to pay for anything for me anymore. I'm old enough that I need to not rely on them so much no matter how sick I am.
My mom said was she just supposed to sit there and watch me die, but my dad doesn't want to pay for it anyway and he's the one who gets the money say and I honestly don't think it would be right for them to pay that much when they really can't afford it. My life isn't that important.
It's not like anyone acknowledges my existence outside my house anyway. Can't even get my siblings to interact with me in any way.
The scan also showed I have severe pectus excavatum, which no one said anything about to me ever in my life and if it's severe why didn't anyone ever think it mattered? Since it's something that happens while you're growing it must have showed on ct scans I've had in the past.
I am wondering if that's why I get chest pains all the time! Dr's really don't care about your suffering at all if they don't think they can give you a drug or operation for it do they?
Nothing is ever going to get better is it
Feeling like the whole world is as done with me as I am.
Finally getting my ct scan tomorrow, was supposed to get a month ago but things keep happening to push it back.
I'm still having a lot of side effects from 2nd dose but I'm going to just get it over with because I can't take how sick I am anymore.
I don't think it will show anything but I can't move to the next step until I get this done.
idk if I even want to, I am so exhausted all the time. I don't even feel like a real person anymore. I can hardly stand to look at a screen even since I got the vax because my head and eyes hurt so much.
I just want everything to be over. I just want to feel good. I want to eat a lot of food and not get sick. I am literally wasting away here and it feels like nothing can be done about it.
I haven't weighed this much since I was 12 but I feel like after I get the ct scan and it shows nothing everyone will just go back to telling me I'm crazy again and not even bother trying to check for the million other things it could be that don't show up on the few tests they gave me.
But it's too much work for them, especially when I'm a charity patient.
honestly feel like I'm dying and all I can do is sit around and wait for it to happen.
As much as I want this to end I would rather it end in me feeling well. I just want to feel semi decent one day. I'll take what I had 15+ years ago even over this and that stuff was bad enough. At least I got some days off then and could eat.
Yep, 2nd dose is kicking my butt in just the way it has to Alyssa so far.
I had the expected fever and body aches for 2 days but then third day my lymph nodes all over my entire body swelled up, headache, itching all over, more stomach pain than usual, everything everywhere hurts feeling super weak and fatigued. Alyssa is 15 days into it and still going through it with no end in sight. Her doctor said give it another 2 weeks and if it's still the same they will run some tests.
No one else I know of has gone through this, but of course we had to because we react badly to everything. This is why I hesitated to get it but I didn't know what else I was supposed to do.
And I feel like I shouldn't talk about it anywhere or to anyone because I don't want to scare anyone off it when it seems like most people are fine.
Got another surprise bill from a pathologist today, I thought for sure that one was covered. It has an email to send about charity care on it so I will do that and hope for the best. Still wont know about the other ones for a bit longer.
I just don't want to go through anything anymore. I want all this bad stuff to be over.
I'm so tired. I know everyone is though.
I am so discouraged, honestly just want to give up on everything.
I thought the tests I got were covered so I got them but I guess only the hospital parts were covered and now I am getting bills from radiologists and anesthesiologists and it's over a thousand dollars. Like how to do they expect me to pay it? I wish they would warn you about these things before you get them done.
I went for my follow up today and of course they found nothing with the 2 tests they did.
He really wants me to get the CT scan but I had canceled it because of money but he said don't worry about how to pay it just get it done. Easy enough for him to say. He doesn't have to deal with his life being destroyed by medical debt.
He also seems to think I should get a feeding tube and I'm just like, nah that's ok, I will starve to death before I get one of those. And it's not like I am not eating at all, it's just I get super sick when I do. If I get down to 100lbs maybe I would think about it but it's not there yet.
He seems to think my body is shutting down from lack of nutrition but I work hard at getting some nutrition every day. I don't think I need a feeding tube. And that would definitely not be in the realm of possibility money wise anyway.
He said the same thing everyone says though, I really need to see a gastroenterologist because all he is is a surgeon so he's just looking at things from a surgical standpoint.
But they have no financial aid at all and are $250 a visit, without anything extra like blood work or whatever! I know because I tried to find help to go to one already and there are none around that will work with you! All of them say you have to pre pay to even get in if you don't have insurance.
I really can't stand how sick I feel but it doesn't change the fact that getting help is impossible when you're too sick to work and have no money.
So what else can I do but give up?
I put off my 2nd covid shot for as long as possible but if I don't get it this week it will be past the 6 week mark they say you have to get it by so I am going to just get it tomorrow and I'm worried how much more sick that will make and if my body will be able to survive it.
But maybe it would be good if it couldn't. Then I wouldn't have to deal with anything anymore.
Alyssa is 10 days out from her 2nd dose and she is still not doing well from it and I dread having to go through that on top of everything else. She says maybe I wont get as bad as her because nobody else did but I am sure I will because we're very similar in how we react to things. I just don't want to do all this hard stuff anymore. I don't want to be in terrible pain and feeling so ill anymore. I want to have at least 1 good thing happen for a change.
Talking to my mom about how maybe I should just not get the test, that maybe it's not worth it, at least this way I get to be skinny and fit into all my cute clothes, but then I remembered oh yeah I feel too sick to wear those cute clothes so it's pointless being skinny if I can't do anything!!!
Also getting really nervous about the billing, I can't get ahold of them. I left a message and you are only supposed to leave one message and they're only open 1 more hour! They better call me back! I need to be reassured the $3000 estimate on online chart is just an automated thing and that I actually will only be billed the $75 the woman who scheduled me assured me it would be!
I don't know how I can go into this not knowing if I will be stuck with an amount that will be impossible to pay! Why does money have to stress me out so bad? Like even if it does cost thousands it's still something I need done and it's not like they take something from me I don't even have. I wouldn't even have $75 if it were not for the fact I saved half my stimulus just medical stuff. I unfortunately had to get a new laptop because my other one had died and I can't seem to live without or get anything done without one, and then I bought a few bras and loungewear since nothing I had fit me anymore. But even if I hadn't bought anything with it still wouldn't have been enough so why do I feel like I have to justify buying myself the things I really need when I had money at the time?!
Also I could only sleep a few hrs this morning because I was so anxious about all the phone calls that had to be done today and I feel so groggy and jittery at the same time like only lack of sleep can do to you. I probably wont sleep tonight either because I will be too anxious about tomorrow but then they will sedate me so I will be forced into then at least.
I can tell my tension is getting a lot higher than it's been because I am back to writing it out on here. Medical stuff does this to me.
My appointment with the specialist guy got rescheduled so I didn't end up going until yesterday, and I guess waiting longer was good because a new symptom of having difficulty swallowing started the last 2 weeks and it felt more urgent to see him than it did before.
It's actually really scary when you need to do the normal things of swallowing saliva, something that your body just normally does on it's own and don't have to even think about normally, and your throat just feels completely unable to do it. It makes you feel like you're being strangled or drowned.
Well he was very concerned about it, especially with how much weight I lost the last 2 years.
I had been maintaining the past few months though and I told him that but now I am going back to being able to hardly eat so I've started loosing that little bit I gained again :(
He talked really rushed and seemed in a hurry to be out of there like most doctors are and it makes me worry I didn't get to tell him enough or everything. He seems to think I haven't been eating at all but I do eat as much as I can when I can and if I feel in the slightest bit improved I will eat a lot until I eventually get to feeling too sick and then I still make myself have some things, even if it's just a yogurt shake or my blood sugar gets so low I get sick from that.
That aside he wants me to get a endoscopy asap, and then a swallowing test and another cat scan.
I think he should just get my records from the hospital I went to that did a cat scan back in august though because they said there was nothing abnormal and I hate to keep getting exposed to radiation if I don't have to but he said he wanted an updated one to look at himself.
So tomorrow I am getting the endoscopy. I was really hoping I could wait until I was fully vaccinated but he wants to do it right away and I don't get my second dose until the 30th and then you have to wait 2 weeks after that.
My biggest fear is getting covid of course. I can't even wear a mask so it's a pretty terrifying aspect. But I can't take this not being able to swallow thing much longer, I was doing my best to cope with everything else but this is just too hard to keep going through.
Of course there is a good chance they look and say everything looks perfect and as healthy as can be and that would be good to know I didn't have any serious illness but also just confirm what everyone always ends up telling me, I am crazy.
And maybe some or even all of it is the mind body connection messing me up, I certainly have had enough trauma in my life that has left me with severe depression and anxiety since I was little that only kept getting worse as more traumas happened. My body is always in hyper alert state, I am not going to act like it's not a possibility but how do I fix that? How do I improve my mind enough to heal my body if that's what it is? It's like they think since it's just a mental problem you have to accept and live with it but it doesn't change the fact that is completely disabling and painful and makes it so hard to live.
And then he was talking about how sometimes things need to be repaired in surgery and sometimes you need a feeding tube and that was just so upsetting to hear. I have this zoned out face and reaction I do in front of people but on the inside I was feeling terror at hearing that!
I never want to have surgery again, it my lifes goal to never again have surgery. After my difficulties with the hysterctomy I just don't think I can go through it again.
And I make myself eat enough to avoid a feeding tube imo, at least I have been. I just don't know if I conveyed that to him well enough. Sure it's mostly rice and yogurt based things but it's some calories!
The one good thing I found out today though was the outpatient surgery area is a totally separate place from the rest of the hospital so I wont be in the same area as the known covid people will be in. My dad is the one taking me since he is fully vaccinated and he doesn't seem too happy about it. He doesn't do well with medical stuff or sick people. But my mom isn't yet so I feel like it's a little less risk to him than her. I would rather have my mom tbh but everything just revolves around trying to keep covid from getting us now so it feels like the best option.
Still need to figure out the finical stuff cause I'm getting mixed messages from different sources but I don't want to talk on the phone anymore :(
I tried to warn the doctor that I was really sensitive to medications but I had to go and try it anyway just so I could say I tried hahahahaha.
It's been a fun day on the toilet in horrible pain for me today! What a day!
She says it should wear off by tomorrow. I sure hope so. I was taking it to try to help the pain and maybe be able to eat better, not to make me even sicker and in different ways!
I knew this would happen because I ALWAYS get side effects. ALWAYS. You tell that to doctors though and they think you're wasting their for not wanting meds.
I don't want meds though. I want to know what the hell is wrong with me!!!!!
Maybe if I had an actually answer for whats going wrong with my body I could try a medication knowing that it was for the exact thing I had instead of this blindly trying things to see if they help in some way. I hate that more than anything! I even told her about how I have a lot of bad experiences with doctors in the past and how they give up on me and tell me I'm crazy.
She was nice and easy to talk to at least. She wants me to try taking this medicine every other day but we'll have to see how long it takes to clear up from this 1 dose before I think about trying it again. I don't want to have to go through more days like this!
I couldn't eat all today and I am supposed to not be loosing anymore weight and here I went down a pound just today which makes me officially weight the least I ever have since I was 12 years old!
Like that is not ok! Even she said I looked too skinny!
She also said I looked really pale, even for a red head, and she's a red head so she knows what she's talking about lol.
I told I was always really pale, but even I noticed I have gotten more pale this year.
idk why, I'm not anemic at all.
It's works out for the better if this med doesn't work for me though because it is $300 a month!!! She said she didn't know if she should even give me the samples since I wouldn't be able to afford it but then she gave me a few weeks worth anyway.
ugghhhh I just hate everything about drugs!!!! ALL drugs! They all do nothing but make things worse and cost a cruel amount!
She wants me to get a colonoscopy and endoscopy too and she can set it up at the hospital I have a charity program with so I think it will be like $100 for that. Which I don't have but that's still a good price for it. The problem for me though is COVID. I am so scared of getting it and going to a hospital and not even able to wear a mask that is just asking for it and it's getting so much worse with cases exploding everywhere so I feel like this was the worst time ever to start trying to get medical help but it took this long to find a program, apply for it, find a doctor and get an appointment. I would have done it a lot sooner if I could have.
Now I think I will just have to put it on hold again, because at least feeling extremely ill on my own I don't have to worry about killing my parents by giving them some illness.
But then you keep hearing about how you shouldn't put things off because it could be too late by the time you get to it. But I mean I'm going on a year since I've had this severe illness so if it was something too awful it would have killed me by now right? What's waiting another year or so until covid is under control some? I say that but living like this has been so unbearable I feel like I can't get through the days and it's so hard not to want to just end it all just so I don't have to suffer this horrible illness anymore.
Also I don't know why my dad is suddenly so against heat this year. Usually he wants it on way before the rest of us! Yeah we had that spell of hot weather recently but now that it's cold again that week of spring temps makes it feel even colder. We're all freezing, including him. He keeps talking about how his joints are aching so much but he wont even warm himself up with his electric blanket even. The one nice thing about the cold though is that I can keep a heating pad on my belly without overheating.