Bad Day

I'm having a really rough couple of days.

I'm so tired of hurting, and I'm struggling with the fact that I'll always be in pain. In most cases I've been told it will get worse, not better, the more wear and tear my body goes through.

Because the root of all my problems is brain damage...nothing can really be fixed. It can be "managed" but that's...the rest of my life..."managed".

I'm 24 years old, I'm supposed to be in my prime, supposed to be able...supposed to be out enjoying life with my friends and my family. But I'm not, I can't. Some days I can hardly move. And the pain is so bad that if I DO go out, I end up wishing I hadnt because it hurts so bad.

The meds and everything else only do so much, and the meds strong enough to make a dent in the pain also make me incapable of going to school or doing anything productive.

So I either sit in a haze and don't care about anything, or I try and "live" my life, but full of pain.

I try really hard not to let it get to me, but today it is. Today I'm so angry and hurting and wishing that I was someone else, someone who doesn't have so much pain, for once I want to be the one who can take things for granted...tying a shoe or taking a shower or running up the stairs or going out.

I feel like I'm trapped in my body. My mind wants so much, to do so much but physically I just can't. But I won't get a break, I can't just leave my body behind for a while.

I don't even know why I'm posting this, I just need to get it out I guess, It has to go somewhere.

Hi LexiRae. I know you are pretty new around the board, so I want to welcome you because I haven't had the chance to.

I'm sorry you're having to go thru so much. I know I wish I could get a new body at times when things get so hard. So I know where you're coming from.

It's unfortunate that you were born with the cerebal palsy. Just know we are here for you whether you need to vent, cry or scream. Take care.

hugs
Loretta

LexiRae you are right when you said ['''I just need to get it out I guess, It has to go somewhere.''] Yes it is good to ''get it out'' and I am glad you feel you can come here to release it! You are so young and I do wish that you did not have this burden.  I like all the others that have posted, I truely do feel for you. As Loretta said whether you need to vent, cry, scream, or what ever, just know we are all here for you!

 

White Beard

LexiRae,

Don't be sorry.... that's what this place is for... to be able to reach out for support when things are rough... or just to be able to vent.

We have different health/pain issues.... but I can identify w/ the wanting a break and just being tired of it all. And I can't answer the question about why things are unfair.... but I absolutely identify w/ those feelings.

You are very young.... and I'm sorry you are having to deal w/ all of these things. I'm praying tomorrow is a better day for you.

Take care, hon.... --Tina

LexiRae, I am late in getting to post here to you. What you are feeling is perfectly normal. It happens to us from time to time and the best thing to do is get it out of your system by coming here and letting it rip. Thats the beauty of this forum, when someone is having a rough time they can come here and talk about it so to speak. Its much healthier to get it out.

You know something that always gets my attention is someone young like you, I think it really does have to be horrible to not be able to do things people your age are doing. Thats a tough cookie to munch on I think. In my case I became disabled when I was 49. My disability is from crohns disease, not CP, I have several health issues I battle. But, at least I had the time to go and blow and do a lot of things people never get to do because of their health conditions striking at a young age. Its a very hard thing to swallow no matter what age and learning to make peace with it takes a lot of time. I have made peace with myself, I had to or else I would have lost my mind.Even with making peace we all still have our bad times as you are right now.

I saw in another post that your insurance cut off your muscle relaxer, Flexeril. Did they cut off just Flexeril or all muscle relaxers? I do not know what type of insurance you have, but if I were you I would ask my dr to write the company a letter of medical necessity for the muscle relaxer. If its just Flexeril, then ask the dr to rx a different one, perhaps Zanaflex or Baclofen. Both are available in generic. You may want to call your pharmacy and ask them what muscle relaxer they have in generic form and get the prices. You may find one that you can afford to pay out of pocket, usually they are not too expensive in generic form.

Hope you get to feeling better...Susie

Thanks soooo much for the tip about Walmart, I'll definitely do that. I've been on skelaxin and baclofen and a few other muscle relaxers, but they make me too sleepy, especially with all the other meds I'm on.

I'll just call my dr and get her to write me another script for 60 and have them send it to walmart.

I have Medicare and I'm on a Humana rx plan. They've been really *good* lately at no longer covering meds I've been on for a long time. My dr said the only way they would cover the Flexeril again is if I tried other muscle relaxers that are covered first, and then if the Flexeril is still the best option for me, they'll cover it for a limited time after which I'd have to appeal again...the whole process would take a while. So going to Walmart is my best option probably.

Honestly, I'm not sure I'll ever be able to accept my situation completely. I can't help but wonder what my life would have been like...especially because of the circumstances of my birth.

My mom didn't find out she was pregnant with me until she'd been pregnant for a while...she didn't think she would ever be able to get pregnant because when she was 19 she had aplastic anemia. All the radiation and chemo was supposed to have made her unable to conceive. So she never used protection... I was a first date *unknown* baby. It was the eighties, she did some drugs, she drank, she smoked cigs. etc..

THEN she found out she was pregnant...

To make matters worse, she went into labor, she called her dr, he said it was no big deal, she said "yes it is its too early" he told her NOT to come to the hospital, so she waited. When she did get to the hospital, he wasnt there, and they waited for him before they did anything...so I ended up being born *dead* at 28 weeks; lack of oxygen etc caused the bleed in my brain which caused the Cerebral Palsy.

Technically I shouldn't be sitting here, but I am. I can't help but be angry though....angry at my mom, angry at the dr, angry at everything.

lex,

i can completely relate to your post, and i wish there were better answers for what ails you. you have to be in severe chronic pain, to even begin to understand even remotely what, we that do, have to live with every single day.

my situation is perm as well. i am dealing with cancer pain related to advanced prostate cancer. i am never going to get better, its only getting worse over time. most of my pain is severe nerve damage, and its unlikely that it will ever heal, due to how extensive it is.

the best advice i can give you, and the only advice i will give you, is to, never, ever, give up hope. no matter what. you just have to keep keeping own, despite how you are feeling, despite the pain. i honestly believe this, and it helps me make it from one day to the next.

my best to you, hope you see some signs of improvement and hope. i feel bad for you at your age in particular, as i am about to turn 60 and have lived a pretty full life

david in sc