Showing posts with label CRPS. Show all posts
Showing posts with label CRPS. Show all posts

A Cat Tail

The day went by too fast! I feel like every time I blink another hour or two has gone by. I hate when it does that. Here it is a bit after 1 am already and I'll be going to bed soon. Despite the swiftness of the day I got a lot accomplished.

I wrote up a funny post about CRPS and posted on one of the CRPS boards. A friend of mine there had mentioned a pamphlet on you have CRPS now what? So, to give you a good laugh too, I'm posting it here for everyone to read.

Congratulations! You have RSD/CRPS, Here's What To Expect

Congratulations on joining the RSD/CRPS community! Due to lack of education you are now one of the millions suffering in silence with a progressive, chronic pain disorder. Don't give up hope though, there is a whole new world opening up for you.

Everyone experiences the world of RSD/CRPS differently. You may or may not have any of the following. If you do have any of the symptoms, do not freak out and do not go to the doctor. They don't know anything anyway. Go online and come to the closest RSD/CRPS forum where Karen is now Mayor.

Symptoms you can expect with RSD/CRPS:

Pain: This is common. Pain is best buds with RSD/CRPS. Try to ignore them as they have fun plucking at your nerve endings. Ignoring it will make them go away.

Burning: This is another common symptom of RSD/CRPS. The little pyromaniacs running around inside are what cause the bonfires you feel. They are harder to stop, but drenching them in water puts a damper on their day.

Jerking of Limbs: This happens for some people. If you are minding your own business and an arm or leg begins jerking and flopping like a fish out of water, go with it. Ever wanted to smack or kick your significant other? This is your chance to do so! After all, you can't control all that flailing can you?

Muscle spasms: These can be quite painful and cause your body to contort into shapes not meant for our bodies to be in. Think of the career you could have in a traveling circus! If leg cramps cause you to sit bolt upright in bed in the middle of the night screaming in pain, take a moment to laugh hysterically as your partner hits the ceiling in fright. Everyone needs a good scare now and then, except us of course.

Electrical Jolts/Stabbing: This is the most beloved aspect of RSD/CRPS. Being electrocuted because of the slightest noise feels so good. If the slighest sound causes you to clap your hands over your ears, curl into a ball and blubber like a baby, it's fine. Those comfy white jackets that are all the rage can be yours too!

Hot Flashes/Sweating: The most annoying part of RSD/CRPS. Sitting on the North pole naked isn't enough to cool you down. In order to try to be comfortable, turn the house into an igloo. If your spouse dares utter a word about how cold it is, snarl at him from the extra-deep freezer you are lying in and slam the lid. He won't say anything to you again.

Other things you can expect from RSD/CRPS. All the hair on your legs and arms might fall out. Not that it's a bad thing, you won't have to shave again! All the hair on your head may also fall out but think of the trend we'll be starting.

Your skin...that which protects us turns on us too. You may begin to notice a slight drying of the skin at first. A good lotion seems to work and you're happy. Day by day you notice your skin flakes off. Lotions stop working and soon you're molting like a snake shedding its skin. Awww, who needs that skin anyway!

These joys and more can be yours as a part of this special disorder. Hurry and sign up at your local ER or doctor's office now!

Sincerely,

All of us miserable SOB's

I Feel Good!

nanananana uh, like I knew that I would now. I think that's how it goes. *laughing at myself*

I finally got my CRPS bone and muscle article in tonight. That's why I feel good! It only took me two or three friggin days! Grrrr I was getting seriously miffed at myself for having a problem. I try not to, I really do. My brain, quite literally, is "wired" differently than other people's brains. As long as I've had CRPS now I am quite sure I have bits which have died. In case your wondering, I read an enlightening article on what CRPS does to my brain. That's how I can say what I have said with certainty. I've known for some time now my short term memory has packed his bags and trucked on down the highway for greener pastures. Isn't that a picture?

I forgot to write last night about a sad death. Yesterday, Sunday, the last Titanic survivor died at age 97. Elizabeth Gladys "Millvina" Dean, who was 2 months and 2 days old on that fateful night the Titanic hit an iceberg. Sunday, being May 31, was the day, exactly 98 years ago, they launched the Titanic in Belfast, Ireland. It somehow seems apropos. The end of an era is now truly ended. There are no more survivors to give us their memories. I'm glad there are many artifacts and the Titanic will always live on in all our hearts, as will the survivors, even if we didn't know them all by name.

Sorry this is short tonight. Instead of easing up, the pain is ramping up. Why me?! *chuckles* I'm just lucky that way, that's why! I'm so used to this CRPS crap that unless it's horrible stabbing it's just annoys the hell out of me. It ruins my concentration and makes doing anything meaningful impossible. *really big sigh* Off to rest my body which has turned on me for the night.

I Didn't Abandon You!

Sorry for the 2 day abandonment. Friday night I was on the phone with T...for four hours...but we accomplished a lot. *big grin* Hope your computer is better now T. It was almost 1:30 am, I wasn't going to even try to write a blog post at that late hour, or early hour.

Last night, I was occupied with articles. Two more articles on CRPS. The first is on CRPS's effects on bone and muscle. The second is the common tests people with CRPS have done. I have edited the first one about six times already and outlined the second pretty well. I seem to be having a problem with finding my words and putting them together where they make sense. In case you're thinking, "Karen, you're writing like you usually do. I don't see anything wrong with it." You must remember writing articles is not blogging. *chuckles* I can use as many, or as few words as I want here. The articles have to be tight, concise and to the point in an orderly fashion. I will revisit the bone and muscle article as soon as I am done here. I hope it's good enough to turn in tonight. I really am trying to do an article a day but so far haven't accomplished it.

In kitty news today, King Connor caught a lizard this afternoon. He likes the corner of the courtyard near the gate. In late afternoon lizards seem to gather there. I'm pretty sure it's because the sun heats up that part for a good part of the day. He pounced on that sucker and trotted off across the courtyard with a very smug look on his furry face. I could almost here him saying, "I'm the man, oh yeah, I am THE man!" *laughing* Of course Gil went out to do the "Catch and release" thing. He almost lost a hand to Connor for that. They hate when we make them let the buggies go. I think they assume we should let them eat the darn things. Ummm...I don't think so! EWWWW! ICK! GROSS!

That's the big excitement for the day. Well, besides my non-functioning brain. I do lead a very unexciting life. *sigh*

Writing and the Brain

I'm proud to announce that on Thursday and yesterday I turned in 3, yes count them 3 articles! *big ole shit eatin grin* Two on Thursday and 1 yesterday. My Big Brain may have huge gaping holes in it most days, but it never completely abandons me. It feels like it does sometimes.

The doubts I had about myself and my ability to write are quickly fleeing. I was plagued by the thought I am not good enough. Who was I kidding thinking I'm a writer and I could possibly have a writing career. I'll never get the hang of writing articles for the web. I also thought I wouldn't get very many page views and the ones I would get would be from the small group of friends I have.

The three articles to come are: CRPS and Family, Myths of CRPS and Aphasia. I have about 14 more articles to come on aphasia and myasthenia gravis alone. June is awareness month for both of these conditions. I won't explain these conditions now because if I did, then you'd have no reason to go and read my articles. It's all about education and bringing awareness to these conditions. In between the 14 I have laid out, there will, of course, be more CRPS articles.

My awesomely Big Brain is on a roll and it feels good. I am starting to pull together a schedule for myself slowly. It takes time to figure out what works best for you when it comes to freelance writing. Especially if you want to make writing a career. I understand I can't be so hard on myself. The pressure I feel isn't from the outside, it's from inside. The stronger the pressure, the more my Big Brain wants to function. I can't get words to come out right. I can't decide what to write about. Then when I do I have no clue where to start or how to begin. It just snowballs from there until I'm pulling my hair, gnashing my teeth and want to scream long and loud till I have no voice left.

Today worked well for me. Instead of putzing around after booting up the computer, I opened my articles folder, made my way to the info I saved last night, and began to write. I got it done, then set it aside to edit later. I didn't have to do much editing.

I know some days pain will get in the way. Pain has a way of wiping out the ability to think and laughs at you because you can't even put two words together. As time goes on I will get faster at writing my articles. I won't mentally abuse myself for not writing any articles on the days my pain level is high. Maybe one day I will be able to write regardless of the day. I might find a way to work around the way pain interferes with my ability to think and concentrate. For now, I am going to concentrate on the goals I have set for myself, maybe think of new ones and continue to strive for they stars.

Disabilities

A lot of the people inhabiting this marble we live on has disabilities. Some are very apparent, others are not. The latter category are invisible disabilites. CRPS is one of them, Fibro is another. There are many others but you get the idea. It's the ones of us who live with invisible disabilites that can suffer greatly.

We suffer from people who judge us with one swift glance because we look perfectly "normal." The people who are and/or look young are judged quite harshly. There's the look of "Oh my, I wonder what's wrong with her.", or "What's wrong with her? I bet she's just faking it." Yeah, like we want to be a 90 year old trapped in a young body. It's how we get our kicks. Don't forget all the pity we receive too. We're faking it so well that we have completely snowed our doctors and the people who approve us to get disability. *snorts* We're all secretly rich too. We're famous in Hollywood because we are the BEST actresses in the world!

We suffer at the hands of people who are supposed to care for us. Judged by too many people as being some kind of drug seeking junkie who can't wait to get the next fix. We love taking all these pills. Can't you see the joy in our eyes?

Alice, a person with CRPS I know emailed me a rant she had posted online. She is also a very good friend of mine. She lives in hell daily while getting screwed by everyone. She gave me her permission to use it here.

"Feeling the need to rant tonight, I left the house for the first time in 3 days after an ER visit and don't want to leave again until I have to see the doctor on Thursday. I never want to leave the house again because I can't take it anymore. Yes I'm one bitter person at the moment. I don't need to be told that, I'm well aware.

I use a walker, I'm slow, I can't help it, I tick, I twitch and if a noise hits me wrong I might just scream. I've tried being a smiley, happy, whatever disabled person and I'm sick of the downright rudeness of people here. I'm sick of the stares, the dirty looks as I park in a handicapped spot and get the walker out of the back seat of the car. The she must be faking it looks because someone my age (37) can't possibly need a walker. I have a permit and an Illinois disabled person card to prove it. Some days I might feel perfectly normal, but most I don't. I made the mistake of leaving the house without the crutches before I got the walker once. I learned my lesson. That something as simple as a trip to the grocery store without some sort of walking assistant device isn't possible anymore.

I'm sorry I'm slow in the store and it's going to take you an extra minute to go around me and/or the person that is nice enough to help me shop. There is no need to be rude to the person helping me out. There is no excuse for pushing her out of the way so you can get what you want faster. There is no need to miss me with your shopping carts by only an inch as you go rushing by. There is no need for the nasty "Excuse Me" (you know the one where you look like you have a bit of poo under your nose and it stinks) when you and/or your uncontrolled kid/s almost run into me or run me over. (I've decided that "excuse me" is code here in Illinois for F you by the way). Please control your children in the store, there are playgrounds for letting them run loose. They are a danger to me and people like me. You wouldn't let them behave like that around their grandparents or other family member with a walker. I and every person with a walker/crutches/cane, etc. deserve the same respect. For that matter, I'm sorry to be moving too slow for the employees of the store to get around me without almost knocking me over on their way to whatever their manager wants them to do. I actually had a guy take the cart I was using one day from me as I was leaving the store. Leaving me to carry bags with crutches to my car, no offer of assistance, just, I'll take that cart so he didn't have to go and retrieve it later.

While I appreciate it, I really do, I don't need you stopping to let me cross in the parking lot and getting nasty when I wave you on. I know full good and well it will take me five minutes to cross that particular patch of pavement, and that one of the idiots that are pulling up behind you is probably going to decide they can't wait and run around you and almost hit me anyway. I know this because it has happened on more than one occasion around town. I know that you're trying to be nice. But trust me, I've only been at this whole disabled thing for about 5 months and I've learned to be wary of parking lots for just this reason.

If you want to know what is wrong with me, ask, but don't argue with me, or tell me that can't possibly be what is wrong with me. Don't tell me I don't look that sick, or one of my personal favorites, it'll get better soon. CHRONIC means it's not going away. I don't need to be told to go to the chiropractor, he's not going to be able to help. I'm tired of politely fending off medical advice. Don't tell me I need what kind of doctor I need to see unless you are that doctor and are willing to treat me for free. But at least you ask and don't stare, point or laugh. I know it's funny when I walk backwards or sideways instead of going forward, or when I'm having what I call a "twitchy" day and jerk or a noise hits me wrong and I scream or stand there rocking with my hands over my ears. I know you mean well, but I know what is wrong with me, what my prognosis is and that my doctors are doing their best to kill me. I'm on an HMO which as far as I'm concerned stands for Huge Moneymaking Organization. There is no profit in curing me they want to keep me as sick as long as they can so I can end up on Medicaid and Disability so they will be guaranteed payment for my "treatment" Yes bitter here too.

Thank you for listening to my rant and I'm sorry my disability is slowing down your rush to whatever. It is not like I planned this, I thought oh let's go and ruin whoever's day. Please don't take my slowness as a personal offense, I'm not out to ruin your day. Trust me, I'd rather not be taking up your precious time. I'd rather be doing something I used to enjoy, like hiking or yoga. Or for that matter being normal and secretly thinking thank the Gods it's not me, we all do it whether we want to admit to it or not.

The reply:Waaaa waaaa waaa people aren't nice to me. People aren't considerate enough. Please stay in your house, your exactly like the chumps I saw at the Secretary of States office that complain because they have to wait. Nothing is good enough for you people. If it were truly survival of the fittest you would be dead remember that next time you complain no one is nice enough for you. You would be dead if society didn't take care of you. EVERYONE HAS TO WAIT, NO ONE LIKES IT. GET OVER IT, and get on with your life being a shut in with your 1000 cats you fat loser.

P.S. Enjoy your walker I am going for a jog."

There it is, harsh judgment from some dumb ass who doesn't know her. He obviously didn't read her rant. She had this to say below the rant: "I don't even feel the need dignify this response with a reply, but for the record, so not fat and society isn't taking care of me, I'm allergic to cats, and did you read the rant? I don't care about waiting, I'd just rather not be run down while doing so. LOL"

Her rant really does say it all when it comes to those of us living with an invisible disability.

Alien Body

This afternoon I grabbed my camera to take some pics of my legs. Trying to capture the weirdness that is my skin thanks to CRPS. Wanting to see if the discoloration of my skin can be captured. I haven't attempted to take any pictures in quite awhile and many changes have happened. I was sitting there contorting my body trying to get these pictures from different angles. I got some good pics. It was worth the pain to get them. I also saw something I hadn't even noticed before. My knees. I was reviewing a picture I had just taken and they looked freaking weird!! My gaze jerked to the aforementioned part of my anatomy and widened in surprise. Holy cow! They look funny because they're swollen. *picks jaw up off floor and shuts mouth* I tentatively reached my hand toward these two foriegn things and poked at one. Quickly snatching my hand back as if my own knees were going to bite me. *laugh snort* For a few minutes I was positively entranced by them. I poked them some more, becoming bold by leaving my hand and fingers within reach of these aliens. There were tiny water balloons shoved beneath my skin.

All this time I thought the only spot on my body with very minor swelling were my ankles. I had very severe swelling from just above my left knee to my foot when CRPS hit me. When I learned to walk on my own it mysteriously disappeared. It took half a second or less for the swelling to appear when I had my leg down. Then one day, gone. I can't even tell you when or what day it disappeared. One day I couldn't sit like a normal person, one day I could. I'm still stunned by what I saw in my knees today. I will have to pay much closer attention to my body. The whole of me and not just the stupid sores and dry skin.

My Man Kitty hunted in vain today for prey. He didn't catch any lizards or come close to catching any. I feel kind of bad for him. He had such a successful hunt yesterday and nothing today. I could almost feel his disappointment. The good news is Shanni didn't catch any either. I think the two Gil rescued from Connor yesterday warned all the other lizards and told them not to venture near our courtyard. The snapping kitty jaws of death and claws of doom would be the death of them all!