Strange Pains

[dahliafaolan]

Ok, I've been worried about this for a while. For a few months I've been having these strange pains. After a few hours up and around (like 8), I start getting this tightness from one butt cheek up to my eyebrow. Some days, it's light enough that I can just ignore it. But other days, I have to stop whatever I'm doing and go lie down. Lying down will lessen the pain, but only sleeping actually makes them go away. I've tried Tylenol and all the over the counter pain meds I have. Nothing eases it except lying down and sleeping. I'm starting to worry that it's something more serious than just muscle tension. Though now I'm starting to notice that the pains are more common when I have more leg spasms. The leg spasms are painless, but I think they might be related to the muscle tightness I've been experiencing because the tightness seems to be on the side that the spasms have been occurring. Do you guys think it's just a muscle tension or is it something more serious I should give my neurologist a call about? Oh, and just for the record, I've never been diagnosed with Chiari, but I was detethered when I was 7 years old. I haven't lost any function of the bladder. My stomach has been a little more sensitive as of late, but I've always had gastrointestinal problems that flare up from time to time. I've had no other pains except for the usual pains I've always had due to my scar tissue.

[LisaJoy]

If it is bothering you enough to interfere with your normal daily activities, I would say to call the neurologist. Couldn't hurt, anyways.

[Lifeisgood]

I agree. If for nothing else, do it for the peace of mind. I hope you feel better soon!

[dahliafaolan]

Still testing the theory, but we think we found the culprit. In the last few months, I have been bouncing around between three chairs (my old folding one, Grape Ape, for when I'm traveling with my boyfriend, my power chair, Big Red, for at school, and my new molded back rigid frame, Black Pearl, for everything else). With three chairs in the house, things got a little cramped and we did a little moving around. Somehow in the moving around, the three seats got switched around. So now we're testing to see if the right seats help. (And yes, I name my wheelchairs.)

[Gymp]

And yes, I name my wheelchairs.

Nuttin' wrong with that,I name my bikes too...My current ride's name is "The Work Horse".Building another bike now but won't have a name for it until it's done and ridden for about a month.

Good Luck Dalhi

Gymp

[sean]

I love that you name your chairs and your bike.
I can relate when I hear poeple are 'thingy' about people touching thier chairs, that'd be me.
I have been meaning to ask if others have recognised or felt an emotional attachment to thier bits or kits or appliances? After all we are somewhat co dependant to these extentions of ones self, they become part of our autonomy.
As I've mentioned I had a Urostomy, wore a bag for twenty years. Even though for me it was a constant tourment and I became desperate to get rid of it. Once I had the surgery I literally found my self in a state of mourning (I know too wierd) It just happened, I missed it deeply, still feel the loss a little. As much as I hated it, it on the most basic level gave me support, allowed me to at least have the life I had.
You don't know what you've got till it's gone.
For years I had phantom leaks, particularly at night in bed, I had this constant radar even as I slept. Many times I'd wake up racing to the bathroom, spooked, then annoyed, then a giggle.
I had many names for my Urostomy and bag, not for publication!
Had I recognised it as part of me, the functioning physical me, named it something fabulous, I probably would have coped much better.

[dahliafaolan]

Well my family and I, not knowing what else to do, gave my cecostomy a name. It started as something my exboyfriend used to call it because he couldn't pronounce cecostomy and then it sort of stuck with the rest of my family. To my family, boyfriend and I, my cecostomy is my button. And well, my port has a name that I only use around my boyfriend (mostly because my family can only sit and giggle when I say it). Its name is Mr. Wiggles.

As for the rest, well, it took me a long time to accept my cecostomy. For years all the appliances and whatnot were internal or disposable, not something I had to see day in, day out. Needless to say, it threw me for a loop. It didn't help that I was at that tender age where another person's opinion of my body was starting to matter. But six months of therapy later, the button and I have made peace with each other. I don't threaten to pull it out, and in return, it keeps me from being constipated and needing to take care of an impaction. It's an uneasy friendship still, but for the most part, I'm content to just pretty much forget it's there till it has to be used.

Though I can understand something of your sense of loss in a sense. Before my mitrofanoff, Mom was still catheterizing me. I still have moments when I wake up and expect to feel my mom moving me around to cath me. It's definitely a period of adjustment.

[Gymp]

Yep,the bag thing I wear has names too.
Its proper name is Pubic pressure urinal,me wife calls it Mr.MacHine and I call it the fu*k'n bag.I've been wearing it since the start of grade 7 (not the same one of course).
Before that it was cloth diapers and those rubber/plastic underwear with the elastics around the leg holes and waist.

I remember once in my drinking days being in a bar with some friends,after quaffing down a few pitchers of beer I sprung a leak that I didn't notice in time due to lack of feeling below the waist and was really wet in the crotch area.I didn't want to get up and let everyone in the joint see that I peed myself sooooo I accidendaly (not) spilled a pitcher of beer on my lap then made the excuse that I had to go home and change.It worked like a charm.

Gymp

[sean]

Goddess on wheels, I have been pondering over "Paranoia is just another word for longevity". First thought what on earth does that mean, sounded so wrong to put a positive spin on paranoia. Woke up in the middle of the night, of course!! paranoia is a self preservation thing, never thought of it that way. Thaks for that, I love a challenge and profound-ditties?
And wouldn't you know I have delt with paranoia, thank goodness I seem to be able to recognise it and keep a tight strangle hold on it, (I hope). It's a hazzard of the incontinent experience particularly in public (actually have often thought if only I could be wearing a dress or indeed a wheelchair it would be easier to get away with, no offence, if that's offensive). I have learnt there are no spotlights sirens and arrows pointing to that wet patch or poo patch that I so masterfully contain and disguise, I no longer sweat profusely with that look of terror in my eyes, that only turns on those spotlights, sirens and arrows. I am so cool and calm and as I say masterful as I've got older. I look back at the ignorant bliss (as I see it) as a child and teen for getting me through, well now I can see my experience with paranoia (insead of all irrational) as not such a bad thing, but something that has got me through. Thanks heaps, sean.
Who's Anita Blake?

[dahliafaolan]

lol Anita Blake is my favorite literary character at the moment. She comes from a series entitled Anita Blake, Vampire Executioner by Laurell K. Hamilton. It takes place in sort of an alternate reality in which vampires and lycanthropes (werewolves, for the most part, but the term can also refer to anyone of the "terminally furry" variety) are recognized members of society and are currently fighting for the vote in America. Anita Blake works as an animator (a person who animates the dead i.e., zombies in cases where wills are contested or some such situation) as her "day job" and works as the vampire executioner of St. Louis at night. Basically, she is the lethal injection for vampire serial killers.

But I fell in love with the world that Laurell K. Hamilton created and the strange political and ethical undertones that surround that world. I also have quite an affinity for the character of Anita herself. She is a Christian woman in a predominately male non-Christian field. But beyond that, she is a little fireball of smart mouth replies that tends to put the way more powerful into their places somehow. Each book is a sort of murder mystery, but it is also an exploration of how she feels that she is "becoming one of the monsters."

As for putting a positive spin on paranoia, I believe that the term paranoia in itself is often a misnomer, especially when it comes to what I tend to think of in terms of the "us/them mentality." For the world at large, the daily fear of being incontinent seems like paranoia. For me, it was simply a reality. But more often than not, my "paranoia" has kept me alive. I'll give an example. When I had the rods in my hips removed, I had the most horrendous headache every time they sat me up after surgery. The doctor dismissed it as just a bad reaction to anesthetics. I, on the other hand, was not convinced. The headaches continued every time I sat up for the next six weeks. So over the course of those six weeks, my mother and I would call the doctor and tell him at least once a week and tell him that something was not right. The doctor called us both paranoid and delusional. At the end of the six weeks, right on Mother's Day as I'm recalling, I ended up having to go in for emergency surgery for a spinal leakage. Seemed to me that maybe paranoia isn't such a bad thing. So when I saw the quote in one of her books, it struck an automatic chord with me. Of course, there are a lot of other quotes of Anita's that struck a chord with me, but not all of them are positive or nice. I would be happy to share others with you if you'd like to PM me.

[Summer25]

Ohhh that sounds like an awesome book! Gotta read it...lol. Ok, sorry for butting in.

[sean]

Well now, I must have been behind the door when they were handing out intrests in fiction or the imagination it takes. I don't know but maybe my reality is all the fiction I need. I have a friend (yes I do have a friend) who is always trying to get me to read the books he gets passionate about, murder mysteries, forensic science, sci fi ect. I have tried, they just put me to sleep.
OMG!!! I am so nerdy give me text, sociology, psychology, anthropology, history, I get lost as I devour them. My all time favourite books are dictionaries, LOL!!!
I rarely see a movie to the end, unless it has some truth, reality or lesson to be learnt.