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Posted 5/28/2010 4:52 PM (GMT 0)
I guess I'm in a "whoe is me" mood again( seem to have alot of them these days every since the meds don't seem to work, the last injection left me off balance,and the heat of the summer is even worse on my head) and have been trying to figure out how and why this pain happened to me? I didn't break anything or strain anything or have an accident or physically do something more than my body could handle..I just woke up one day and there it was..all in my head. I had a great family, carreer going well, getting ready for grad school and bam... Is is Karma? Is there something in my past I have done that I don't remember and its suddenly catching up on me? Is it this much talked about higher power trying to put me in my place? Have any of you ever felt this way? Its been 10 years now and all the tests say nothing wrong....all the doctors scratch their heads...
I just don't get it sometimes...
You are all decent folks..why did this happen to you?
Skeye is our hero and yet she can't catch a break..Is something trying to tell her that maybe the trial is NOT suppose to happen?
What is it that makes us all the "lucky" ones?

Guess its just another bad day.
Catahoula
Posted 5/28/2010 6:31 PM (GMT 0)
Hey cat , I know it seems that way but I think if you make a list of all the people and things you have to be thankful for , you'll see its not so bad , just part of life .I don't know how old you are , I just made 54and I do expierence new aches and pains sometimes , just wake up with them , like you said didn't fall or hit anything just age perhaps .But I only feel bad if I think of it as unfair , when I realize everyone has their challenges its ok , I can deal with it .Those are just thoughts we put in our head that disempower ourselves , its still hard for me to catch myself , I guess stuff like this happens because stuff like this happens , the good thing is we can overcome it . Best of luck , stay positive , we really are lucky I beleive . Mikel
Posted 5/28/2010 8:09 PM (GMT 0)
I'm sorry that you're feeling this way. I do understand because I have been feeling that way lately too which is why I haven't been posting much.

Hugs,

Flower
Posted 5/28/2010 11:30 PM (GMT 0)
Hi Cata,

It's really hard when you don't have any answers. I had an injury which started all this, but we still don't know what is really going on. It's like a giant puzzle. We have some of the pieces, but not all of them, & so I'm still diagnosis-less. Sometimes I feel like I would be so much happier & more at piece with this if I had a real answer -- even if it was something horrible -- at least I'd have an answer. Pain is often an invisible symptom & it's so subjective, which makes it even harder to diagnose. I don't blame you for feeling the way you do. Without an answer, it's hard not to wonder about the true cause. Sometimes I feel like I'm going crazy because the tests, etc come back normal, yet I'm clearly not normal. It's incredibly frustrating. Try not to stress out too much. I don't know why you have all this pain, but I don't doubt that something is wrong, even if none of the tests come back abnormal. Science and medicine are advanced, but there is still so much to learn. We don't know all the facts; we can't detect all the problems in the human body. So just because a test doesn't show something, it doesn't necessarily mean that there isn't something there. I wish I had some great piece of advice, but I don't. Just hang in there. Keep fighting & don't ever give up or give in!

hugs,
Skeye
Posted 5/29/2010 1:29 AM (GMT 0)
Wow Cata,
sure wish I knew what to say...would be nice to know why this happens...but I'm just clueless...
keep on venting away and like what Skeye said, keep on fighting and don't give up or in...
Lots of soft hugz coming your ways
((((((((((((((((((((((((((((((((((((((((((((((((((cata)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
Posted 5/29/2010 4:06 AM (GMT 0)
catahoula
You know I have been trying to get a diagnosis for what is happening to me for over ten years, one doctor says one thing and another says something else, I was told I had Parkinsons and was on Senamet a Lodosyn 4 times a day for over two years, till they sent me to a movement disorder center in chicago that specializes in Parkinsons, and they say I don't have it, and they weaned me off the meds, but they do say I have some kind of movement disorder, but I need to have further testing, but all the neurologist I have seen all say it is because of my disk in my back, and they will do no further test! I had to fight to get an MRI of my brain and it was abnormal. They don't know what it is, brain trauma, MS? who knows but they will not check further, the Neurologist says it is the disk! I wish this guy could convince all the other Doctors of that! So right now I am back to where I was ten years ago! I know how you feel when you ask yourself "why me" But I think Mikel has a really good point there is so much to be Thankful for! I know when I look at all the problems that allot of the folks here at this forum have, well .......for me it put things back into prospective, there are allot of folk here that have it so much worse offf than me. And when I really want to set my self straight, I think about all those cancer patients that I took care of when I worked as and RN up on the Onco unit! When I think about them I guess I don't have it bad at all! Not at all!!! It helps me to do that,... because I know I would love to have some answers, ..................... I keep asking the Doctors where is all this going to end up??, You know I will be 59 next month and I walk bent over with a cane, like a man in his 70's, it scares me! It really does scare me sometimes! But yet I know, that I am very very fortunate compared to so many others! and I really feel for them!!!! My heart goes out to them!.......... Especially the ones that are young!



catahoula your thread is very thought provoking!



White Beard
Posted 5/29/2010 5:12 AM (GMT 0)
Awww Catahoula, I'm sorry you're feeling this way....I've been in the same kind of mood lately. I've been dealing with chronic pain for probably 30 of my 48 years. I had Fibro symptoms when I was 15 and it's never gone away. As the years go by, it's gotten worse, and then you add in all the other stuff that's going wrong in my body, and it just becomes too much.

I don't know if I believe in the whole "trauma = fibro" theory, but I lived a pretty weird life in my teens - I was on my own at 15, I lived with whoever had a couch I could flop on and there were lots of parties, with a lot of drinking and drugs. I often found myself waking up passed out who knows where....so who knows "what" might have happened in those times. I've read the theories that a trauma of some type can trigger Fibro in some people, and I don't doubt that's what I had happen. Still, I do sometimes question "why".

In addition to the Fibro, I have chronic pelvic pain, and no one on my medical team at the Pain Centre seems to agree with what's causing it. It appears to be a muscle problem, and I have all these trigger points in my pelvic region and on the abdominal wall, but from what? Where did they come from, and why won't they go away....blah blah blah. No one knows.....so I live in pain and in limbo. And I'm STILL waiting for an appointment with a particular orthopedic surgeon regarding my hip issues and what's to be done with that. * le sigh*

I really feel for you. It's such a tough thing to live like this without answers and without results and improvements. Vent away...we all know what you're experiencing, that's for sure.

I know for me that my faith as a Christian is what keeps me going. I don't know if you have a religion or a spiritual belief, but I do find it a big comfort in my life. I hope that you're able to work through the darker days and stay positive that things will get better. I really hope that your doctor(s) is able to help you get relief and that all the treatments etc. that you need for improvement are made available to you quickly, so you're back on track fast.

I'm glad you posted this. I know we all probably think it and feel it and ask it as well. I pray constantly for the people in these forums, for healing and strength and comfort. None of us deserve what we're going through, but here we are in the trenches and still fighting the battle. I'm thankful for the others here who help me get through another day. ;-)

hugs,
Pam
Posted 5/29/2010 6:36 AM (GMT 0)
Cat, it is not Karma. It is not a higher power trying to get even with you. It is not a payback for some horible or not so horible thing from your past. It is called life and there are no magical formulas that say this one get this and that one gets that. There is no evil or good ruler saying this one gets off free and this one has to pay. It is called life. I was injured by a man having a very bad night and I had to arrest him. I did nothing wrong. These bodies were never meant for long term usage. They wear out. For some of us it seems they wear out sonner than others. Either way, they will wear out. Personally, what keeps me sane and moving forward is the hope that some day I will get to turn this worn our heap of flesh in for a new one and one that will last forever. I am not trying to preach here but that gives me hope. If I thought this was all there was, I would turn it in in a heart beat. In this faith that I have, it helps me to keep focused on something beyond the pain and all that is attached to it. Oh I have my days. Some days it is all I can do to struggle to get through it and then realize that unless something changes, I will face it again tomorrow. I know how you feel. I have no simple slogan or moto that will take it all away or make since of it. I just simply have faith. Hang in there cause that is what we all do. 
Posted 5/29/2010 1:14 PM (GMT 0)

Well said Fatherjohn!  Cat, on my worst day (actually everyday) as hard as it is I start being grateful for everything I have, my family, my friends, my ability to think, anything and everything, when I mentally make this list it does help to make CP more bearable....the other thing I do is Thank God that its me and not my kids! 

And of course we have our HW family to vent to safely!

Hang in there.....we UNDERSTAND!!

(((((((((((((((((((((((((((CAT))))))))))))))))))))

XXOO
Patti 

Posted 5/30/2010 3:35 AM (GMT 0)
Oh Catahoula   ((((((((((((((hugs))))))))))))  I'm sorry you're having such a hard time.  I've been feeling the same way alot lately.  I hope your doctor can find what is causing your pain really soon and can help you really soon.  Take care.

 

hugs

Loretta

Posted 5/30/2010 4:56 PM (GMT 0)
Aw Cat you are in a bad spot. I think every single person that has suffered any kind of medical illness always ask the question of why me or what have I done to deserve this or that. That is pure human nature I guess. I still from time to time ask the same thing myself. Accepting is the key for most of us and it is a lot to accept, especially when we did have another life at another time. I have 4 auto-immune diseases which is unusual, I guess my body has just turned on itself and doesn't like itself, thats my explanantion for that problem. I just try my best not to think about the bad or the difficult and concentrate on what I can actually do and take it from there. I think if most of us sat down and wrote out the good/bad list, our good side would be bigger than the bad, its just hard to see it that way some days. On those days that is when to come here.
Posted 5/31/2010 2:12 PM (GMT 0)
Hi Cat, Wow some of our good friends have written some really good stuff! I know there's no way I can say anything as good as they did so I wont try. I'll just say that it seems like bad things happen to good people, there's no rime or reason for it, it just happens. Sayings like "Only the good die young" come to mind. I'm not a religious kind of guy in the church going way but I do believe there's something out there in control and that when we die, it's not over. I do pray alot for friends and family because I feel so helpless and it's the only thing I can do to try to help. Often I do find myself feeling sorry for myself (way to often) for the hand I was delt or should I say, the hand I delt myself!!! But Like Mikel and some others have said, I'm so lucky for the things I have, especially my family and friends and I'm soooooo much better off than so many others that when I get that feeling you know the "why me crap" I just start thinking about those who are so less fortunate than me and I get to feeling selfish for my thoughts and that usually straightens me out!! I know I talk in circles and don't make much sence sometimes but I hope I helped just a little!
Hang in there dear Catahoula (love your name!)
Big Hugz and prayers for Y'all!!!
Pete
Posted 5/31/2010 5:09 PM (GMT 0)
hi catahoula, nice to meet you and sorry for your pain and the way you are feeling right now! I sooo understand what you are saying because I have felt very much the same lately! My chronic back pain started 3 years ago and now I have a bunch of new stuff going on...possibly RA. Lately, I have felt like I can't take anymore and that this is so unfair, not just to me but to my husband, also! I mean what did he do to deserve falling in love with someone who was destined to fall apart just 5 short years after we married? This forum and the people have been life savers for me. Just being able to express myself to people who really understand is amazing! Hang in there and take care of you!!!
Hugs,
Beckey
Posted 5/31/2010 6:44 PM (GMT 0)
Thanks all for your kind words. I have been reading and just rereading them trying to get understanding from every point of view.
Maybe I look too deeply for answers that just aren't there. I don't mean to ask "why me" as a whiny , not a "why did this happen to ME" but rather a "why did THIS happen to me". I know there are so many in much worse places. Everyday for awhile there when the pain was bad I would tell myself "at least I'm not buried under some building in Haiti".Now it seems one can pick any corner of the world and think "at least I'm not there" . I guess I just get tired. I know you all have the same feelings at times. On Saturday I had 15 family members over to celebrate my daughters graduation. It was a beautiful sunny day and yet while the family, some who traveled as long as an 11 hour car ride, sat on the deck and watched the boats go by catching up on time gone by, I had to spend the day in my bedroom laying down. Any change in temp or pressure and my head feels as though it will burst. Sometimes I just think "ENOUGH"..I'm at the point of filing a DNR if I ever end up in hospital..I just don't think, if the choice appeared , that I would want to be brought back. I've lived enough to see both kids graduate college and hopefully soon start their lives. ( yes I know, I'm only 56 but on days it feels 156). This has been 10 years..Sometimes its just been enough.
BUT today I guess I should say "at least I'm not fighting for my life in a war" and honestly take the time to thank those who have suffered the greatest pain and sacrifice.
anyway..this too hopefully will pass. I see the doc again on Wednesday for yet another round of nerve blocks.
Maybe she will have a stronger med than the embeda/norco combo I seem to live on.
Maybe tomorrow I will awake and it will all be gone.
Maybe...

I send healing thoughts to you all on this Memorial day.
I thiank you for being here.
Catahoula
Posted 5/31/2010 6:59 PM (GMT 0)
Cat you are just tired of feeling as you do, you get tired of seeing life sort of slip by without you, its the combination of everything, not just one simple thing. This is why I believe that people with CP are the very strongest people in the world. Not just anyone can endure some of the things we do. I remember all too the well the year of wanting to give up but yet I didn't. I just have to keep fighting it some how. I still have a day that slips in and I have that "I don't want to live my life this way" but somehow I manage to hang on long enough to fight it off. I get very tired of battling multiple health issues on a daily basis, I wish I could have one day of only one health problem existing for that day, I want to remember what that feels like. It may sound silly but it is a struggle dealing with so much at times. And naturally everything wants to hit at once, not one thing at a time, lol. That would be too easy.

I am sorry I know I am not offering up any solution for you, except to keep fighting.
Posted 6/1/2010 5:44 PM (GMT 0)
just thank you to all for being there and listening
cat
Posted 6/1/2010 6:47 PM (GMT 0)
Cat,

My heart hurts for you during this time of need. I wish I had answers, but I can only offer support.

The fact that family would drive 11 hours to see your daughter graduate says a great deal about you and about her! Many familes don't care enough to make a telephone call....let alone drive for such a distance. Although you suffer so much and feel exhausted and depressed, you must still inspire great love in the people around you. Keep fighting....tomorrow may hold the answer to your prayers. We never know what tomorrow brings.

All the best to you.
Posted 6/1/2010 9:41 PM (GMT 0)
thanks..but..the family didn't drive 11 hours to see my daughter graduate. She graduated 2 weeks ago closer to their home but they couldn't go. The reason the family folks came was to go to a birthday party for an old neighbor who was turning 95. They came to the party simply because they were "in the neighborhood." I don't know why its important to clarify that. Perhaps because my family has not been "there" me through all of this. My elder brother still says I am just a dope addict who should go into rehab and this constant pain is just nonsense. He told me this 5 years ago, right after I had offered to donate part of my liver to him because he needed a transplant. I haven't heard from him since. My sister hasn't communicated with me in years. I don't understand this. Maybe they are afraid or just don't understand or maybe its just the childhood we all managed to survive.
Whatever. I don't know why I had to say that, but I did.
funny the inhibitions pain will take away.
sorry for being so glum
cat
Posted 6/2/2010 2:34 AM (GMT 0)
Cat
I have a older sister, my only sibling, and we have not spoken it 5 years! It is a long story but things like that happen. And it is hard, I sense the hurt you feel in you post, and I can understand it. No reason to be sorry, your just human like the rest of us! We all have our ups and downs and the emotions are sometimes just right under the surface waiting to emerge! We are all here for YOU Cat!

White Beard
Posted 6/2/2010 7:46 PM (GMT 0)
Cat, my brother is like yours in many ways, we live 20 mins apart and I may get one phone call a year. We were very, very close until he had a TBI in a car accident 5 yrs ago, now I don't exist. My oldest sister hasnrt spoke to me in 8-10 years, lol, the next to the oldest thinks I take too much medication, but then she is too dang mean to ever get sick, how would she know, lol. My 3rd sister is disabled from RA and COPD and she is the only one of 4 that gets it. As luck would have we do not live in the same town. It would be wonderful for both of us if we did because you know how isolated we become. I do not discuss my medical issues with my immediate family that caused too many problems too. So, I am telling you this because you are not alone in the family dept either honey. We all have those lovelies in our families and life that is like biting into a sour apple or even a rotten apple, lol. Take care gal, I feel for you.
Posted 6/2/2010 8:45 PM (GMT 0)
I had several spine surgeries and Im dealing with a bad auto-immune disease. However, I push myself to live everyday.  I cut this out of a article I read shortly after my mental break-down.  I currently have the saying taped to my desk. I read it several times a day now. But from the first time I read it I got it! And from that point on I started thinking positive when things clearly were not.  I don't post here much since people here view my comments as abrassive. But when someone is hurting you can't help but to hurt for them.

I hope you will understand the below and not take it the wrong way. But maybe the quote will help you as it did for me.

"I told myself one day, you better start facing this thing head on or it's going to destroy you.  People are dealt bad hands all the time, but it's how you overcome them, how you deal with them" - Richard Collier

So few words but such strong meaning. Hope thing turn for the better for you!

Posted 6/2/2010 10:18 PM (GMT 0)
Pains thanks for posting that, I like it, and there really is so much truth to the very words. I don't think Catahoula will mind a bit.
Posted 6/3/2010 4:28 PM (GMT 0)
Thanks pains. It makes alot of sense. I don't find your post in any way abrasive. Perhaps we are alot alike. I tend to just say things"like they are" and later get told I could have been a bit more delicate. Well I don't have time for "delicate" sometimes Makes more sense to me sometimes to just cut to the chase.
I thank you and hope you start to post more.

On a follow up note. I saw the pain doc again yesterday. Went through a series of occipital, supratrochleal, supraorbital and auriculotemporal nerve blocks , 10 needle sticks in all. I'm still pretty numb but very tender( does that makes any sense?). Hopefully one of these "jabs" will do some good and ease the pain. I guess all I can do is wait and hope.
thanks to you all
catahoula
Posted 6/4/2010 1:53 AM (GMT 0)
Hi Cat, I sure hope those nerve blocks do their thing and give you some much needed relief.
I haven't been posting alot either because I've been going through my own little struggle. I think sometimes with CP you just get tired of it all, tired of facing the day, tired of dealing with "well meaninged" friends or family. I know intellectually there are worse off people, that I am loved, but I just want to go to bed and sleep. I'm full of "I shoulds" and not big on doing.

Hope some of this echoes for you. It helps to know there are others out there struggling along. I'm also sick of waiting, I always seem to be waiting for meds to kick in or meds to get out of my system or appointments or something. I just want a normal day.

Maybe we could all meet up for a normal day with no pain, no meds, no depression, it would have to be hot and sunny, preferably by the water. Nice barbecue and salads, what do you reckon? I know I'm going slightly mad here but wouldn't it be lovely? golitho
Posted 6/4/2010 2:04 AM (GMT 0)
Cat I am with you 100%, I believe in putting the cards out on the table. I do not have the time or patience to ***** foot around most of the time, lol. I Love it.
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