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LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/16/2012 3:23 PM (GMT -6)   
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.

grandmaroses
Veteran Member


Date Joined Jan 2011
Total Posts : 1355
   Posted 5/16/2012 4:27 PM (GMT -6)   
LexiRay we all have days where we need to vent and sometimes it is easier to do it here because we are all here because we understand chronic pain.

Sorry your feeling so down, I wish there was a way to make things better.
Take care
Rose



Insulin Dependant Diabetic, Fibromyalgia, Gerd, IBS, Sleep Apnea, COPD, Spondylolistesis, Diabetic Neuropathy, Fatty Liver, High Cholesterol

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/16/2012 5:05 PM (GMT -6)   
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
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

badreflux
Regular Member


Date Joined Aug 2010
Total Posts : 74
   Posted 5/16/2012 10:00 PM (GMT -6)   
oh.I am so sorry ...ypur right ypu have every reason to be upset at your body for bei.g in pain at such a young age ..I can totally relate except I am 44 and go through the same feelings as you ...super big hugs to you ...I hope you get some days that you have some relief and can enjoy stuff ...

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 5/16/2012 11:56 PM (GMT -6)   
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

Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/17/2012 12:51 AM (GMT -6)   
Thanks everyone,

I've just felt really frustrated lately. I'm not feeling "strong" or "capable" or anything but beaten. I just want a break, even knowing I won't get one and I know that. It just gets to be so tiresome, I feel like everything I do revolves around pain and trying to avoid it, lessen it, or deal with it. It shouldn't be that way. I know life isn't fair and I know technically my situation could get worse. But I'm soooo tired of people who have never had *real* physical pain a day in their lives telling me that I'm "lucky" and "blessed" and "should be grateful that my situation isn't worse". What's so wrong with me being upset? Why can't I be allowed to feel like I got the short straw?

I know feeling sorry for myself won't really help anything its just....I'm just so tired, and everything hurts, and there's nothing I can do to make it better, there's nothing anyone can do to make it better, its just pills and patches and PT that hurts and side effects side effects.

I just feel totally lost when I think that this will be the rest of my life. Why are things so unfair? This isn't my fault. How can people willingly do stupid things, willingly hurt themselves...and come out scotch free while me? I was just BORN.

I'm sorry....

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/17/2012 4:24 AM (GMT -6)   
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
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/17/2012 3:05 PM (GMT -6)   
Your prayers must have worked- mine often don't, but today has been a better day. Not sure if it's because the weather is better or what, but somehow I woke up hurting less and was able to get some things done like shopping and picking up some scripts.

Thanks everyone for your support and understanding...I know there's not much anyone can really "say" to make things any better but knowing I'm not alone helps, having my feelings validated helps...maybe I just needed to cry and vent.

I hate crying, I hate feeling sorry for myself, it makes me feel weak and out of control emotionally, which is how I feel physically...and I always pick on myself for letting it happen.

But maybe being strong doesn't mean not being weak...maybe it means going forward and getting up even when you are weak, even when you don't want to or don't think you can.

I appreciate everyone here so much...

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16757
   Posted 5/17/2012 4:39 PM (GMT -6)   
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
Moderator, Chronic Pain Forum & Psoriasis Forum

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 5/17/2012 4:43 PM (GMT -6)   
Lexirae....I just put a part of my post in another thread to you about the Flexeril...

At Walmart....a 60 count of generic Flexeril is only $8.....So it's extremely cheap to go ahead and pay out of pocket until you can get it straightened out with the insurance company...

Or yes...as Stray mentions...there are other muscle relaxers that you can see if your insurance takes...Robaxin and Skelaxin are two others added to what she mentioned....

But for the meantime....I would certainly just pay the $8 out of pocket for now....
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/17/2012 7:53 PM (GMT -6)   
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.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/17/2012 11:21 PM (GMT -6)   
LexiRae,

I have two identical twin daughters (20 months) - that for every reason - shouldn't be here either. They were HUGE surprises... made it against all odds.... and are truly miracle babies. I didn't know I was pregnant w/ them until I was a few months in - and I was on MAJOR medication.

I don't know your faith background... and you don't have to share.... but, with my faith, I know everything happens as it's supposed to be and that God has a purpose for bringing us all into the world. In the midst of hard times... not feeling well.... it's hard to remember that, I know. But you are young and have your whole life in front of you.... and, just by reading your posts, I think you have a good head on your shoulders.

I've wasted a lot of time in my own life doing the "what if?" game.... (I had a rocky childhood, etc). There reached a point, though, that I learned to accept that I have purpose and I've let a lot of the anger and hurt go.... and just moved on w/ acceptance. It can take a long journey though.... I just hate for you to be suffering w/ all these "mind" questions on top of your chronic pain.

Just food for thought. You have value and we are glad that you are here. I'm sorry for the hard things you are going through. Keep reaching out for support and letting us know how you are. People here really do care.

Take care, LexiRae.... --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/18/2012 12:06 AM (GMT -6)   
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
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

gangsterkathryn
Regular Member


Date Joined May 2012
Total Posts : 44
   Posted 5/18/2012 8:49 AM (GMT -6)   
Hey LexiRae,

I am so sorry I didn't see this sooner!
I hate complaining, too, but not as much as I hate people who say "you could be worse" or something similar. Stupid freaking idiots, I say, they have NO idea what they're talking about! My boyfriend is one of those people... Sometimes I want to say "I know it could be worse but right now is the worst it has EVER been." He still wouldn't get it. He thinks that he is the strongest person ever but one little ailment and he's a big baby, laid up in bed whining...

Life is rough, it sucks. We're so young, it is crazy how we've made it through all of our pain to still function in a way. I'm so glad that you had better day yesterday and hope you have an even better one today. It sucks to hear things will get worse and not better but there is no guarantee either way. Keep working with your doctor for the medication cocktail that works the best. I know what you mean about things making you so sleepy, you can't function... I am always sleepy on the patches but at the end of the day or during a very inactive time, I have to fight falling asleep but they really help. I hate to, but I drink some caffeinated stuff and eat sugary things to help keep me awake... I gradually drink/eat them to not crash, it does help... Just in case you get on something that makes you sleepy..


Target and Walmart both have awesome generic deals... They both list them on their websites, so I'd look there.

Good luck! <3
Kathryn - 22 years old.
Mommy to Baby Scott - May 18th, 2011.

Accidents: Jan. and Oct. 2008, Nov. 2009.
Surgeries: Eye - 1995, Lumbar Laminectomy L4-5 - Feb. 2008, Cesarean Section - May 2011 and Gallbladder Removal - June 2011.
Current Medication: Generic Fentanyl 50 mcg/h patch every 72 hours (feels ineffective after 48), Meloxicam 15mg once a day and Generic Tylenol for breakthrough.
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