[BlueSkye]

Hi, my name is Skye- I have been around neuro difficulties all my life (my mother has MS) and I now am struggling with Neuro problems myself. Its a scary situation for a gal like me- I'm stubbornly independent, hate not being able to do things on my own, live 8hrs away from my family (who I am very close to), and can't afford to be off work. I'm a little scared. My ON has flared to the worst it has EVER been- I spend most my days drugged up just to not be in pain. I'm in the process of getting a referral to a neurologist here in the South Texas Valley, but having to start from scratch with new doctors is frustrating. I'm looking forward to having people to talk to (in addition to very sympathetic family and boyfriend) that can understand just what this is like. People who have not dealt with it tend to not be very understanding...

[Rrae]

Welcome to NT!

You've found the perfect place for the support and understanding you've been looking for! Feel free to look thru the forums and post wherever you feel inclined.
There's a caring soul around every corner.

Just holler if you need help finding your way around or have any questions. Friends here are more than happy to help.

It's great to have you!

Rae

[Emma]

Originally Posted by BlueSkye

Hi, my name is Skye- I have been around neuro difficulties all my life (my mother has MS) and I now am struggling with Neuro problems myself. Its a scary situation for a gal like me- I'm stubbornly independent, hate not being able to do things on my own, live 8hrs away from my family (who I am very close to), and can't afford to be off work. I'm a little scared. My ON has flared to the worst it has EVER been- I spend most my days drugged up just to not be in pain. I'm in the process of getting a referral to a neurologist here in the South Texas Valley, but having to start from scratch with new doctors is frustrating. I'm looking forward to having people to talk to (in addition to very sympathetic family and boyfriend) that can understand just what this is like. People who have not dealt with it tend to not be very understanding...

Welcome BlueSkye!

I'm so sorry to hear you're in pain. I know what it's like to feel like some days are just gone by while we struggle to get by. Hope by the time you read this you will be feeling at least a bit better

If you'd like to talk I'd be up to whenever you'd like, I joined due to the same reason. I'm not only struggling with this personally but also professionally, and you are right... not everyone can be understanding of how complicated and frustrating this can be.

[Darlene]

Skye,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[BlueSkye]

Thanks y'all... tried to get up and go to work today- but the pain is just too much. The Dr. was supposed to get the MRI results yesterday and then get me referred to a neurologist- but I'm still waiting for the MRI results to make it to him. This is really messing with me emotionally- the only medicine I can take that seems to help some is stadol - which is fine, but I certainly can't go to work high. I start the day debating with myself on how bad the pain is and should I try to go to work, then ultimately taking the medicine, hour or two later I feel well enough that I get irritated with myself that I didn't go to work and then in about an hour am back in pain so I know I couldn't have. It has turned into quite the mind game.... so many places that have information seem to think that a heat pack and some motrin will fix me right up- >.< but it is bigger than that, so it's good to know that I'm not just blowing this out of proportion! For now I guess its medicine and back to bed. Its good to know that I'm not the only one struggling with this! *hugs and prayers* for you guys too!

[Emma]

Originally Posted by BlueSkye

I start the day debating with myself on how bad the pain is and should I try to go to work, then ultimately taking the medicine, hour or two later I feel well enough that I get irritated with myself that I didn't go to work and then in about an hour am back in pain so I know I couldn't have.

That is insane. It's exactly how I felt when I first started back in January with my Neurologist. At first it's very hard, I mean... you think you can tough it out but then if you underestimate your pain then you're a walking zombie and you do things poorly - everyone gets mad at you at work. Because nobody understands. Then I used to get the typical thing, which I hated btw: "Why are you here then? Should have stayed home!". Sure... like you're going to pay my rent, and my groceries, and do all this pile of stuff for me too... :P

I did the dumb approach tho, I toughed it out and continued work (for months). Now I'm doing worse than ever with a bed rest of over 50 days and a longer list of woes. So when in doubt, do know that even if your pain does go away through the day, then it's a day you deserve to take for your health.

I sure hope it moves along quicker, so you get seeing a Neurologist soon enough and you get started with a proper treatment for this.

[BlueSkye]

Thank you Emma, I sat down and realized that this is the exact situation that I planned for when I hired on with my current job, glad I was thinking more reasonably then. Having been paying into short and long term disability for the past year means that I really can stop panicking as much (still panicking some) about not being able to work. I've always been stubbornly independent and felt like I had to work hard every work day to support myself. But if I'm not in good health what good am I for anyone? I know that my family, boyfriend, and friends will be supportive- (and happier to be so if I'm not as stressed and cranky about it I would bet!)
I can only imagine how frustrating best rest must be- I hope that you are doing better and can be up and going before the 50 days! (and my furball Rambo sends a hug and cuddle too! )