How do I get help?

[ThriveOrDie]

If I am not quite ready to throw in the towel, how do I get people to take me seriously without being manipulative? I've asked my family for help. They know I want to die. My parents throw me a few crumbs here and there but they would really rather spend their money on traveling than helping me survive. I can't get government assistance because I don't have kids and I can't get disability because I have Lyme disease. It's pretty unlikely anyway and it takes forever. I need help now. I've been sick for 15 years, I'm not willing to wait it out much longer. I called a very well known "Christian" charity and they told me to read the bible and accused me of making bad choices when they knew absolutely nothing about my life. I've made good choices. I've treated my body very well for the last 15 years. I've never used drugs, alcohol, cigarettes etc. I've done everything in my power to get myself well. Gah!! It was like talking to a fucking robot! I feel like my problems are fixable but only with money which I don't have. It seems like the only way to get people to take you seriously is to do a fake suicide attempt. I can't live like this any more. I can't even have healthy relationships in my condition so I just pull away because I can't deal with other people's BS.

 

[InkBlot]

There are so many questions to ask, in order to best serve you.

Do you work?
How far has medicine gotten you with your lyme disease?
Does anything make you feel better emotionally?

 

[ThriveOrDie]

There are so many questions to ask, in order to best serve you.

Do you work?
How far has medicine gotten you with your lyme disease?
Does anything make you feel better emotionally?

I am not able to work. I was able to keep it together and work easy jobs for 13 years. It was absolute hell. I could barely keep up and eventually got laid off because I was too slow.I haven't been able to work for a couple of years. There is no medicine for Lyme disease. MD's use antibiotics which don't cure it and causes more problems on top of the disease. Naturopaths use high dose Vitamin C IV, rife machines and other treatments depending on which one you go to. Antibiotics wreck your GI tract and it's really hard to fix if you already have GI problems. I get horrible pain in my gut, uncontrollable vomiting and such when I take antibiotics. I feel naturally happy on the rare ocassion when I feel ok physically.

 

[InkBlot]

I am not able to work. I was able to keep it together and work easy jobs for 13 years. It was absolute hell. I could barely keep up and eventually got laid off because I was too slow.I haven't been able to work for a couple of years. There is no medicine for Lyme disease. MD's use antibiotics which don't cure it and causes more problems on top of the disease. Naturopaths use high dose Vitamin C IV, rife machines and other treatments depending on which one you go to. Antibiotics wreck your GI tract and it's really hard to fix if you already have GI problems. I get horrible pain in my gut, uncontrollable vomiting and such when I take antibiotics. I feel naturally happy on the rare ocassion when I feel ok physically.

If you have a MD, and can prove Lyme Disease is making it impossible for you to work, then you can get disability. Anxiety is a cause for disability. Being overweight due to any factor is a cause for disability. A disease that makes it impossible for you to work, is cause for disability.

My grandmother had Lyme Disease, I say had because she went to a specialist who gave her pharmacy worth of stuff, and it basically went away. She still "has it" but doesn't affect her anymore. It may not have a cure, but it can be treated into remission. There is hope. It just requires money and the right doctors and specialists.

I asked about happiness, because I want to know if you have hobbies, things you do for fun.

 

[ThriveOrDie]

There are no MD's that I know of in my area that treat Lyme. It is curable if it is caught early. Mine was not. I was sick for at least ten years before I was diagnosed. If you have chronic Lyme and no money you are better off dead. I don't even have the motivation to eat much less go through the nightmare of disability proceedings. I don't have any hobbies. I listen to uplifting music as a distraction sometimes. It's hard to enjoy anything when I feel so shitty.

 

[angelicism999]

that sounds like a horrible situation, i'm rly sorry sis :(

have you tried going to a support group? i googled rly quick and there's one in tuscon i think! idk if that's your thing at all, but i feel like people who go would have more knowledge of like resources and stuff

(it also doesn't sound like yr being manipulative at all, it sounds like the ppl who are supposed to be supporting you just really aren't doing it in good faith so they're minimizing your circumstances and blaming you? it's so unbelievably shitty, i so get why that would make you suicidal)

 

[ThriveOrDie]

that sounds like a horrible situation, i'm rly sorry sis :(

have you tried going to a support group? i googled rly quick and there's one in tuscon i think! idk if that's your thing at all, but i feel like people who go would have more knowledge of like resources and stuff

(it also doesn't sound like yr being manipulative at all, it sounds like the ppl who are supposed to be supporting you just really aren't doing it in good faith so they're minimizing your circumstances and blaming you? it's so unbelievably shitty, i so get why that would make you suicidal)

Thank you. I have looked into some Lyme organizations and they don't have anything to offer. They usually either do research or they just spread awareness about Lyme. I haven't checked out the one in Tucson yet. I haven't been living here long.

Edit: I emailed the Lyme support group here and it seemed iffy already because the info on their site was outdated but I emailed anyway and it bounced back saying the email no longer exists. But I think I may have found some Lyme doctors in the area. They will most likely just want to force antibiotics on me. There is a condition called Post Lyme Treatment Syndrome where it sounds to me like they just made the Lyme worse. IDK if I can let an MD near me. They always make it worse for me.

 

[After The End]

If I am not quite ready to throw in the towel, how do I get people to take me seriously without being manipulative?

Just responding to this. I have read the rest of your comment. Don't think I'm singling this out, but others have responded to the other bits. I don't know if I'm near the mark or anything, but when you say this it gives me the impression you may be fairly stoic, but even if not, and you're simply not into the whole being manipulative, turning on the water-works thing I wanted to tell you that I've known other women in this position. It's not what society expects. Love it or hate it (and I hate it) gender stereotypes are real, and lots of people don't take women seriously if they're not crying and turning the drama up to eleven. At least try to be open to the idea that this may be how you have to get your foot in the door sometimes. I know it sucks and I wish I could say you can be true to yourself and everything will be OK, but that isn't always how things work.

I've known one or two women who were sick or had dire fucking problems, but just because they were forthright without being dramatic or tear they would be treated like everything was fine. Then some girl comes in with a stubbed toe willing to sniffle and simper and she has a small army of people crowding around her begging for a chance to help. It's pathetic. But it is what it is.

So I guess the point of my rambling is don't be afraid to be manipulative if you have to be. If you know you need help (and who else would know better?) and if it's the only way you can get it well believe me you are competing against women who will use every trick in the book to make sure they get the plush treatment, whether they warrant it or not.

For the rest of your issues I'm afraid I just don't know enough to provide more than my best wishes. Save to say that I had a friend from Kansas who had lyme disease and nearly died as a result who is a really great person and has since gotten into politics in a small way. Kansas is near Arizona, no? Now, I don't know if I still have her details, but I can try to hunt them down for you as I'm sure she'd be willing to talk, and she might have some better advice. Especially since (unlike me) she knows the health system over there. I'm afraid I do not, being from AU.

 

[ThriveOrDie]

Just responding to this. I have read the rest of your comment. Don't think I'm singling this out, but others have responded to the other bits. I don't know if I'm near the mark or anything, but when you say this it gives me the impression you may be fairly stoic, but even if not, and you're simply not into the whole being manipulative, turning on the water-works thing I wanted to tell you that I've known other women in this position. It's not what society expects. Love it or hate it (and I hate it) gender stereotypes are real, and lots of people don't take women seriously if they're not crying and turning the drama up to eleven. At least try to be open to the idea that this may be how you have to get your foot in the door sometimes. I know it sucks and I wish I could say you can be true to yourself and everything will be OK, but that isn't always how things work.

I've known one or two women who were sick or had dire fucking problems, but just because they were forthright without being dramatic or tear they would be treated like everything was fine. Then some girl comes in with a stubbed toe willing to sniffle and simper and she has a small army of people crowding around her begging for a chance to help. It's pathetic. But it is what it is.

So I guess the point of my rambling is don't be afraid to be manipulative if you have to be. If you know you need help (and who else would know better?) and if it's the only way you can get it well believe me you are competing against women who will use every trick in the book to make sure they get the plush treatment, whether they warrant it or not.

For the rest of your issues I'm afraid I just don't know enough to provide more than my best wishes. Save to say that I had a friend from Kansas who had lyme disease and nearly died as a result who is a really great person and has since gotten into politics in a small way. Kansas is near Arizona, no? Now, I don't know if I still have her details, but I can try to hunt them down for you as I'm sure she'd be willing to talk, and she might have some better advice. Especially since (unlike me) she knows the health system over there. I'm afraid I do not, being from AU.

Yes you are spot on...I am pretty stoic most of the time. Thank you for your input. Kansas is about 1200 miles away.

 

[Shamana]

If I am not quite ready to throw in the towel, how do I get people to take me seriously without being manipulative? I've asked my family for help. They know I want to die. My parents throw me a few crumbs here and there but they would really rather spend their money on traveling than helping me survive. I can't get government assistance because I don't have kids and I can't get disability because I have Lyme disease. It's pretty unlikely anyway and it takes forever. I need help now. I've been sick for 15 years, I'm not willing to wait it out much longer. I called a very well known "Christian" charity and they told me to read the bible and accused me of making bad choices when they knew absolutely nothing about my life. I've made good choices. I've treated my body very well for the last 15 years. I've never used drugs, alcohol, cigarettes etc. I've done everything in my power to get myself well. Gah!! It was like talking to a fucking robot! I feel like my problems are fixable but only with money which I don't have. It seems like the only way to get people to take you seriously is to do a fake suicide attempt. I can't live like this any more. I can't even have healthy relationships in my condition so I just pull away because I can't deal with other people's BS.

Sorry for asking but have you tried LDN? I know it's beneficial for some people with Lyme, but I imagine that you have read it all. I don't understand why you can't get disability with a chronic disease? I know the benefit system can be hell. I'm applying for a disability pension atm and it looks like it might get through but with things being the way they are now, I don't think it will help me all that much.

 

[ThriveOrDie]

Sorry for asking but have you tried LDN? I know it's beneficial for some people with Lyme, but I imagine that you have read it all. I don't understand why you can't get disability with a chronic disease? I know the benefit system can be hell. I'm applying for a disability pension atm and it looks like it might get through but with things being the way they are now, I don't think it will help me all that much.

I haven't tried LDN. It is not a cure but it might help me cope a little longer. I am going to make an appt with a doctor to see if I can get antiemetics to go with the SN I just ordered just in case. I will ask about LDN and give it a couple more months before I decide anything. Most MD's don't recognize Lyme as an issue because there are no pills for it. I've heard most disability cases get rejected. You have to reapply numerous times, get a good lawyer and hope for the best. The chances are even worse for Lyme because the medical establishment denies that it exists...it is a bioweapon so the government has been trying to cover it up. If by some miracle I could get on it...it's really not enough money to live on if you are sick.

 

[Shamana]

I haven't tried LDN. It is not a cure but it might help me cope a little longer. I am going to make an appt with a doctor to see if I can get antiemetics to go with the SN I just ordered just in case. I will ask about LDN and give it a couple more months before I decide anything. Most MD's don't recognize Lyme as an issue because there are no pills for it. I've heard most disability cases get rejected. You have to reapply numerous times, get a good lawyer and hope for the best. The chances are even worse for Lyme because the medical establishment denies that it exists...it is a bioweapon so the government has been trying to cover it up. If by some miracle I could get on it...it's really not enough money to live on if you are sick.

But are you officially diagnosed with Lyme's?

 

[ThriveOrDie]

But are you officially diagnosed with Lyme's?

Yes, by a naturopathic doctor

 

[After The End]

Yes you are spot on...I am pretty stoic most of the time.

As utterly stupid as it is this might be part of the problem. My sister is fairly stoic despite a raft of physical and psychological issues, and it took her years to learn how to make people actually take her serious, and sadly, in most cases, it meant playing up to stupid gender stereotypes. However little she wanted to, but the squeaky wheel, as they say, gets the grease, and a lot of morons can't process that a woman could be genuinely suffering without making it into a tear-laden drama fest. Even the stupidest things like whether or not they will give you decent painkillers in hospital (regardless of how objectively painful your condition is) can hinge on your ability to play things up.

Thank you for your input. Kansas is about 1200 miles away

Sorry, I really am awful at US geography ^^;;

 

[ThriveOrDie]

As utterly stupid as it is this might be part of the problem. My sister is fairly stoic despite a raft of physical and psychological issues, and it took her years to learn how to make people actually take her serious, and sadly, in most cases, it meant playing up to stupid gender stereotypes. However little she wanted to, but the squeaky wheel, as they say, gets the grease, and a lot of morons can't process that a woman could be genuinely suffering without making it into a tear-laden drama fest. Even the stupidest things like whether or not they will give you decent painkillers in hospital (regardless of how objectively painful your condition is) can hinge on your ability to play things up.

I'm not sure if I can do it. Thanks for your input though.

Sorry, I really am awful at US geography ^^;;

No worries. I had to google it, lol. I knew the general area of the country but no idea how many miles away.

 

[After The End]

I'm not sure if I can do it. Thanks for your input though.

Sorry, I wish you all the best either way.

No worries. I had to google it, lol. I knew the general area of the country but no idea how many miles away.

She is online if you'd like to talk anyway.

 

[Final Escape]

If I am not quite ready to throw in the towel, how do I get people to take me seriously without being manipulative? I've asked my family for help. They know I want to die. My parents throw me a few crumbs here and there but they would really rather spend their money on traveling than helping me survive. I can't get government assistance because I don't have kids and I can't get disability because I have Lyme disease. It's pretty unlikely anyway and it takes forever. I need help now. I've been sick for 15 years, I'm not willing to wait it out much longer. I called a very well known "Christian" charity and they told me to read the bible and accused me of making bad choices when they knew absolutely nothing about my life. I've made good choices. I've treated my body very well for the last 15 years. I've never used drugs, alcohol, cigarettes etc. I've done everything in my power to get myself well. Gah!! It was like talking to a fucking robot! I feel like my problems are fixable but only with money which I don't have. It seems like the only way to get people to take you seriously is to do a fake suicide attempt. I can't live like this any more. I can't even have healthy relationships in my condition so I just pull away because I can't deal with other people's BS.

Have u tried NA or AA? These groups can help guide u to resources sometimes. The people in there really do give a shit and can be very supportive.

 

[ThriveOrDie]

She is online if you'd like to talk anyway.

Sure. How do I get in touch?

Have u tried NA or AA? These groups can help guide u to resources sometimes. The people in there really do give a shit and can be very supportive.

I never thought of that. Thank you.

 

[Liveandlearnagain]

There are no MD's that I know of in my area that treat Lyme. It is curable if it is caught early. Mine was not. I was sick for at least ten years before I was diagnosed. If you have chronic Lyme and no money you are better off dead. I don't even have the motivation to eat much less go through the nightmare of disability proceedings. I don't have any hobbies. I listen to uplifting music as a distraction sometimes. It's hard to enjoy anything when I feel so shitty.

I am with you Thrive.

I've done it all for Lyme and nothing works. Not antibiotics, not anything. And I mean I really have tried everything. You are lucky there are no Lyme doctors in your area. The antibiotics don't work, they just leave your wallet lighter. It's a real disease but there are very few treatments that do anything long term.

 

[ThriveOrDie]

I am with you Thrive.

I've done it all for Lyme and nothing works. Not antibiotics, not anything. And I mean I really have tried everything. You are lucky there are no Lyme doctors in your area. The antibiotics don't work, they just leave your wallet lighter. It's a real disease but there are very few treatments that do anything long term.

You've even done Rife machines? I was going to try that next. How long have you been symptomatic?

 

[Liveandlearnagain]

You've even done Rife machines? I was going to try that next. How long have you been symptomatic?

Six years of Lyme. I haven't done rife machines because I didn't believe it would work. If you can, let us know how it goes. I've spent over $50,000 on so many different treatments at this point and am still right back where I started.

 

[ThriveOrDie]

Six years of Lyme. I haven't done rife machines because I didn't believe it would work. If you can, let us know how it goes. I've spent over $50,000 on so many different treatments at this point and am still right back where I started.

Ok I will keep you posted :)