[Beautiful_Pain]

RA is being a pain, worse than usual. My joints feel like they are full of hot glass. Wrists, knees and ankles. My balance is off and trying to 'catch' myself makes it worse. My shoulders are useless, I can barely carry a can of pop, and I have no grip on top of that. Opening doors is next to impossible, going to the bathroom is also nearly impossible. I can't shower myself (not to mention I've almost fallen out of the shower a few times so husband says I'm 'not allowed' to do it myself) I asked him last weekend, starting friday, to help me...I didn't get a shower at all last weekend. So its been almost 2 weeks and I feel disgusting, and can't do anything about it. On top of all that I have a cold, over a week now, and can't take cold medicine--I'm allergic to the active ingredient in all I've looked at. Which makes me very wary of trying to even find a different active ingredient, I'm allergic to alot of meds and doctors sometimes have to take a minute to think of a med I'm not allergic to, to prescribe.

I just really hate my body, and what it doesn't let me do for myself, the pain it feeds me constantly, the hallucinations it surrounds me with, the paranoia that's always closeby. My 2 constant voices are being really annoying lately, and arguementative with me. They are pissing me off. I get weird shakes too, I always kind of assume its a pain response? idk for sure, though.

Tribal health is completely screwed up and I can't even see my rheumatologist, get meds for the RA--over a year now. There is also a complication with me getting psych meds, so I'm not on anything there either. This F'ing sucks. F'ing sucks. F'ING SUCKSSSSS I'm tired of this stupid crap

I guess this is just a rant, or something. Its not like something anyone here can help with

[CedarS]

What happened with tribal health? What is the complication concerning you getting psych meds? I feel for you having to go through this, especially with everything hitting at once.

You've probably already done everything you can and then some, but would it work to tell your husband that you really really need help with a shower, right now? Also is there a health care provider you can tell today that you are experiencing an increase in mental health challenges?

The shakes may or may not be a pain response, can you get this checked out soon?

Also - any chance at all of getting a home health care person to help you out?

[Beautiful_Pain]

In 05, when I first went to the ER after a SU attempt, someone working there didn't do the proper procedural paperwork for me to be admitted to the MHU--and I got referred from the MHU staff to my rheumatologist. So, I wasn't correctly referred, since my MHU wasn't either. They won't pay until they find out what's going on, who is at fault etc. I don't have the means to pay my (former?) rheumatologist, he doesn't return my calls or respond to messages I've left or the letters I've sent.

Haha, yeah, when I just went and did the best I could earlier then came in and mentioned how long it had been since I'd had a shower, he reacted with surprise. I also mentioned how I'd asked starting last Wed, and he didn't say anything directly in reference to that, but asked why I didn't say anything just now. I just said I was tired of waiting.

MH-wise, its not really an increase and compared to last winter (the most active it had been recently), its mild. The 2 voices are constants and have been for 20 years. Lately I've just been seeing bugs flying where there isn't any, and small animals moving when there aren't. When I go outside, I hear the grass swishing and crunching slightly like someone/something is walking closeby. Paranoia is brief, 10-30 minutes at a time.

Due to my living situation, and the number of adults in the house, 2 of which are able bodied, I don't qualify. ¬.¬

[CedarS]

Any sort of ombuds/advocate that can straighten out the paperwork and payment situation? Sounds really frustrating and it sucks that you end up not getting good health care.

I hope your cold is over or almost over, you deserve a break!

Might need to use the good ol' broken record technique on hubby. Hey you could even write your request for help down and tape it to the frig! Then you can just point to remind him.

Any meds in past ever helped with paranoia and voices? I feel for you with the med sensitivity - I deal with that too.

[Beautiful_Pain]

Any meds in past ever helped with paranoia and voices? I feel for you with the med sensitivity - I deal with that too.

None I've been rx'd so far >.> Med sensitivity isn't common in my family, just my nephew and I have it. I'm the special one who gets all the odd stuff

This coming week there is a nurse going to come by the house to talk to me. My aunt called someone and I don't know anything but what she told me that there will a nurse coming to talk about my RA. I don't know if she's a tribal health nurse or what...or what about my RA she plans to go over or talk about? I said I would talk to her and I guess I will find out the specifics when she stops by. -shrugs- Doesn't really bother me, whatever she is going to talk about, I just hope it isn't going to be like the basics of RA. What it is and what it does and such, I'm quite aware of that and have been for a few years. But if its anything else, I don't know or care--its just like "Whatever" and *shrug*. If you know what I mean

If there is any way she can help, great...if not, just a different waste of time, since that's all I do anyway. ._.

Anyway, just an update and will post after the nurse comes by if there is anything to disclose or rant about

Cedar, sorry I took so long to reply, it was just me not wanting to even think about things. Thank you for replying

BP I have fibro so my pain is a bit different.. but i still am so sorry you are having such a hard time. I really hope that things get better for you soon girl!

[Beautiful_Pain]

Thanks Rainbowzz

No nurse last week...maybe this week sometime? I'm assuming its a Tribal Health nurse since she didn't come last week like she was supposed to

[nightbird]

so sorry there, beautiful!

I am recovering from cancer, radiation, chemo, surgery, the whole cha-cha. I can relate to pain, surely.

I noticed an improvement in my physical condition, and the pain intensity overall, when I began listening to guided imagery cd's and affirmations. I played the cd 2 x a day, which cd I played depended on what I was experiencing at the time, and I must tell you, it has helped.

I'm not one to go in for every new, fandangle, you know?

I'm only writing this to you because it helped me immensely deal with side effects, lower pain, change my positions on pain - my attitude about it, and also gave me renewed hope - or we give it to ourself thru re-languaging how we talk about and to our bodies!

I hated my body once. I was hurting all the time. It was changing and I began to detach from it. I became more ill. I'm so sure my body knew how much anger I was holding, and shame, and helplessness.

That has all changed! Yup. Little by little I tried new things.

Take it one step at a time, and try something new yourself.

There are movement classes you would qualify for, and they are amazing. There are qi gong instructors everywhere, or by a cd, and try that. There are these wonderful tapes that work with us in developing a healthier, positive outlook - which helps with how we experience our pain, and our bodies, and life in general.

Everyone here is probably sick of me talking about 'my BellaRuth' (Napersack) .... a certified, qualified PhD. who makes tapes for many different types of problems and areas where people suffer from poor health.

I have been using the chemo and rad tapes when I needed them, and fight cancer tapes....for months.... and my side effects were minimal and my outlook kept improving.

Now I'm working on total wellness and I will get fatigue next, then of course, healthful sleep... although these wonderful cd's put me to sleep ( ;

Best to you!
Yes, we need medical attention, of course. Fight for it.

While you do that, there are other avenues you might care to persue in order to help you deal, give you support, and encourage your health and total wellness ... as hating our bodies DOES NOT work.

Love yourself, your own body ... and treat it gently and tenderly.
It's been with you a lifetime. WE need these bodies to do their best.
Be grateful you can try other avenues to address your pain, and even heal where your body hurts... we all deserve this.

So, you can try TCM, eastern medicine, qi gong, special exercises gentle on your body, vitamin therapy, or nutritional choices that reduce inflammation, and RA must have an association or somewhere you can contact for support.

It can be the turning point for you, Dear Person.

Best of health to you in the future, and now
Sending positive thoughts your way....

Peace,
nightbird