I don't really know where this goes, and my brain is kind of like scrambled eggs right now, so I'm sorry but I couldn't come up with where it's supposed to. Please move if there is a better place.
I don't really know.

the past... maybe 6-8 months my general pain and discomfort level has increased. the level of suck has risen way past annoyance to "interfering with my life" level.

I'm seeing lots and lots of doctors of a variety of specialties. Not much is coming up. But we keep doing tests and stuff.

Meanwhile, I have trouble opening jars, I have issues being intimate recently because all my joints are messed up, nerve pain wakes me up and there is no improving the sensation or escaping it, I have to have people help me cut my food, I can't paint, on and on.

I'm 31.

Despite this, I really need to find some way to get some kind of income.
Even though I'm on SSDI, it's not very much money at all. A huge amount of my income- sometimes approaching 70%- goes toward shelter expenses alone.

I really can only work one day a week- and that's what I think I can maybe work, I'mnot even sure. But I really want to try. I need the moeny and I think it would be good for me. But I can't do anything crazy overstrenuous.

I applied recently to a place and I tried not to be too ecited but I thought I did reeally well.

I didnt' get the job. Aand really, that's just kind of the final straw.
I feel so stuck. I'm starting to feel like I can't change anything.

At the end of every month at this point my accounts are in the negative. So i get my SSDI check and they withdraw automatically from the check to balance it out, so I end up with less and less money each month. It's a cycle. It pretty much guarantees I will be stuck in that rut unless I get some other form of income. Which is really difficult to find given my current helath situation.

I feel like I have no power right now. It's soooo frustrating.
I wish I could figure out what to do.

I don't have that much energy to do something on my own either, I'm not terribly reliable so I can't commit to operating a business myself right this moment or I would pursue that.

I feel really sad and edging on hopeless. The nerve pain... I don't know how to deal with it.
I talked to my neuro and since we jsut started like three new meds between her and the rheumatlogist, she basically wants me to just try to hang in until I've been on them for a little bit longer.

Ok.
I'll try to be a trooper.

Um.
How long can I go being sleep deprived?

I don't even kinow, this probably doesn't even belong anywhere.
I'm pretty miserable right now.

Am I just posting about stuff that like... everyone else constantly goes through all the time but no one talks about?

I don't hear anyone talking about this stuff, but if I did maybe it would help.
Maybe I'm just so engrossed in my own personal stupid that I don't pay attention to anything else.

I don't know if I'm way out of line here or not, I kind of feel like maybe I am, but I can't actually tell at this point.

Actually. I more get the feeling that it's getting old that I write about my problems. Which is a natural fear of mine- that I am a huge burden.

So. er.
I kind of default to just assuming I am saying or doing something horribly wrong.

[Wren_]

I usually find that once sleep deprivation starts going on for awhile ... it makes everything else seem that much worse and harder to cope with; and right now with you it seems like you already have a lot going on as it is. Is it the pain keeping you awake or something else ... or not sure?

Sorry to read about the job ... I really wish something would turn up for you; if you could have any job at all what would you most like to do?

[Pikku Myy]

Josie Really hope whatever medications you are trying will help soon! I can not even imagine how you deal with pain... and no, you are not a burden

[PeachCream22]

Josie, I understand what you mean when you say you feel like a burden and don't pay attention to anything else. Other than that, I do not think that I can imagine the pain and frustration and sleep deprivation you're going through. If I were you, I would've ranted a lot more here and flipped tables at home.

I don't know how to advise you regarding your pain, but I want you to know that you're always welcome to talk about it here.

Regarding your condition, I can only just give you a general piece of advice: take care of yourself, just don't care what others think about you being a burden or whatever, you have a lot on your plate right now. Just focus on yourself. You don't need to worry about anything else right now, otherwise the pain might increase, and you don't want that...

[arachnophobia.kid]

You express yourself well Josie, kudos to you for that. Your self analysis is well thought out and I can empathize with your confusion/frustration about your current state. To me it sounds like you're doing your best, but unfortunately you're losing hope because nothing seems to be working despite all your efforts.

I hope you can find some peace about this soon. Know that you do have options! And that not all is lost, you can turn this around and find the relief you're longing for. I encourage you to keep reaching out and keep doing your best, because then life will happen, and it'll work it's magic in you.

Feel free to PM me if you want to and please don't feel like a burden, it'd be a pleasure for me.

[gayleggg]

Hi, Josie. Don't feel like a burden. We are hear to listen, especially when you are hurting and need to let the feelings out. Hope you feel better soon but keep posting to release the negative vibes. Take care.

Thank you so so so so so much for the responses.
It really helps a lot.

One of my fears is always that I am really negative, that sometimes that's all I am, that it encompasses me and I kind of become known as "the negative person". Like that people think of me and groan a little inside.

And also it's hard to not become swallowed by your poor health or your everyday crap when it's just ALWAYS there. It's hard when you are so fearful you are a burden that you are afraid to talk about it too, though.

I just worry that I grate on people's nerves and when my joking and stuff is over, it's too much to take my serious stuff on. My biggest fear is really that I wear on people.

Thanks so much for responding.

I went to the rheumatologist today. I really really really didn't want to go.
I was afraid of going and telling her that the new NSAID wasn't working, and just generally frustrated. But it helped to have the first couple responses that didn't say like "suck it up" or something like that- they were supportive and I really appreciate that.

So, she is kind of going on a hunch that I might have fibromyalgia and something else. She is waiting for some tests that had to get sent out to come back, but we are trying prednisone- which may or may not end up with my mood elevated. But we both kind of agreed that if that happened, we can deal with it after if the prednisone actually helped, because then we'd be getting somewhere?

ALSO, someone last night referred me to somewhere that my writing style might fit well where I may be able to submit some writing and get some money.

I'm feeling slightly better, heh.

Thanks.

[arachnophobia.kid]

I do get the vibe from you that you've got a lot of negative perspectives on things as you mentioned. At the same time I kind of admire the way that you put others before yourself because of it, at least it seems that way. Like how you feel as if you are a burden on your doctors or on the people that you talk to about your problems. In some ways I think it's really good that you recognize and care for the people who are trying to care for you, but at the same time, know that it's okay to be in need. People care about you too! And they wouldn't want you to deny yourself the help that you need.

I'm glad that you're feeling a little better now and I'm glad your visit with the doctor went well. Sounds like things might be turning around a little bit too, with the opportunity you have to write. I hope that these things are just the beginning of a long and well deserved winning streak.