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
Showing posts with label RSD. Show all posts
Showing posts with label RSD. Show all posts
I'm Baaaack!
Sorry about the 2 day silence everyone. I was on my way here day before yesterday and my internet went down on me. It was just after midnight and didn't come back up till after 4 am and I was already sound asleep. Last night I got too tired even though I wanted to come do an entry.
Today, I saved the life of 1 lizard. He wasn't very big either but Shanni girl didn't seem to care, or Connor either. A couple of hours later, Gil saved the life of another bigger one. A medium size lizard teased Shanni by hanging out on the screen, but up too high for her to get at. Little bugger didn't even bother to try and go anywhere else either! I think he was laughing at her.
Late this afternoon Connor spotted one that pissed him off. It was a huge one! He was on the wall between the corner of the house and the post of the gated off bit in the courtyard used to storing the water hose and recycle bins. He stood up reaching toward it but was just a little bit shy of his goal. Then he crouched and leaped into the air but didn't get it. That was the funny part because between Connor and my line of sight on him are the garbage cans. All I saw was Connor bounce way up high in the air and then drop to the ground. It kind of looked like he had used a trampoline! *giggles* He tried getting at it from different angles. This one was smart though and refused to budge from where he was safe. Connor finally gave up in disgust and stalked off to the other side of the courtyard. I swear if he could talk he would have been saying, "Damn it! Stupid lizard doesn't even have the decency to let me get a little shot at him. Fine! I'll just go over here and find me another one then!"
I had some difficulty for the past few days over writing my articles. I wrote this article and it was published with no problem. It is about RSD skin issues. The article I turned in the day before that one was rejected twice. I'll admit it pissed me off. In one of the other articles I did, I mentioned some percentages for a RSD related symptom, gathered from a survey I'm doing. See my rant on apathy concerning RSD'ers not helping with awareness. That post is here. Anywho, I referenced it before and nothing was said. It published fine. I did the same in this article on RSD and family issues and they're having a hissy fit about the details! *sigh*
I'm actually very glad it was rejected though because when I reread it, it sucked! It jumped from the main point in the 1st paragraph, to something totally unrelated in the 2nd. I hadn't realized what I did before I turned it in. I was also getting frustrated with the writing of my articles and that pushed me over the edge. I haven't worked on the articles I've started nor have I tried rewriting the family one. I realized I needed to take a step back and take a little break. As badly as I messed up in the family article, I see I got careless. I'm going back at it starting tomorrow with a clearer head. I certainly won't be careless again. I will not rush the writing and editing just to get an article turned in. It's not worth it. I don't want a jumbled, piece of crap article sitting there under my name. I don't want people to try to read it only to walk away shaking their head wondering what the hell I was thinking when I wrote it.
My hands and arms are hurting so I'll stop here. See ya'll tomorrow!
Today, I saved the life of 1 lizard. He wasn't very big either but Shanni girl didn't seem to care, or Connor either. A couple of hours later, Gil saved the life of another bigger one. A medium size lizard teased Shanni by hanging out on the screen, but up too high for her to get at. Little bugger didn't even bother to try and go anywhere else either! I think he was laughing at her.
Late this afternoon Connor spotted one that pissed him off. It was a huge one! He was on the wall between the corner of the house and the post of the gated off bit in the courtyard used to storing the water hose and recycle bins. He stood up reaching toward it but was just a little bit shy of his goal. Then he crouched and leaped into the air but didn't get it. That was the funny part because between Connor and my line of sight on him are the garbage cans. All I saw was Connor bounce way up high in the air and then drop to the ground. It kind of looked like he had used a trampoline! *giggles* He tried getting at it from different angles. This one was smart though and refused to budge from where he was safe. Connor finally gave up in disgust and stalked off to the other side of the courtyard. I swear if he could talk he would have been saying, "Damn it! Stupid lizard doesn't even have the decency to let me get a little shot at him. Fine! I'll just go over here and find me another one then!"
I had some difficulty for the past few days over writing my articles. I wrote this article and it was published with no problem. It is about RSD skin issues. The article I turned in the day before that one was rejected twice. I'll admit it pissed me off. In one of the other articles I did, I mentioned some percentages for a RSD related symptom, gathered from a survey I'm doing. See my rant on apathy concerning RSD'ers not helping with awareness. That post is here. Anywho, I referenced it before and nothing was said. It published fine. I did the same in this article on RSD and family issues and they're having a hissy fit about the details! *sigh*
I'm actually very glad it was rejected though because when I reread it, it sucked! It jumped from the main point in the 1st paragraph, to something totally unrelated in the 2nd. I hadn't realized what I did before I turned it in. I was also getting frustrated with the writing of my articles and that pushed me over the edge. I haven't worked on the articles I've started nor have I tried rewriting the family one. I realized I needed to take a step back and take a little break. As badly as I messed up in the family article, I see I got careless. I'm going back at it starting tomorrow with a clearer head. I certainly won't be careless again. I will not rush the writing and editing just to get an article turned in. It's not worth it. I don't want a jumbled, piece of crap article sitting there under my name. I don't want people to try to read it only to walk away shaking their head wondering what the hell I was thinking when I wrote it.
My hands and arms are hurting so I'll stop here. See ya'll tomorrow!
I uploaded belly pics and one of Shanni and Connor into Flickr. I'm going to add more tomorrow of some outside pics I took and some of my feet and legs in all their RSD glory!
Today it clouded up, then the sky opened up and dumped buckets, complete with thunder and lightning. It was awesome. The wind was whipping the trees around, leaves on the big trees outside were flying through the air. I love storms because they are so elemental. They make me feel energized and alive. It's going to do it again tomorrow. I'm going to try and capture the rain and wind with the camera.
As much as I love them, I have to pay a big price now. It hurts me. No, it's more than that. A storm begins to build in my body as it does outside. The pain escalating until I want to curl up into a ball and whimper with the force of it. The thunder rolls through me, scooping out bone marrow as it moves through. The electricity from lightning in the air streaks along my nerve pathways sizzling and shocking me from head to toe. My muscles bunch and knot painfully as I tense. Then they smooth out as I concentrate on relaxing my body so I don't add to the pain. Sound makes me want to cover my ears to try and block it out. Each sound is separate, distinct, then jumbles together to produce pain. No one can touch me because my skin is so sensitive. The smallest puff of air across my skin has tears welling in my eyes. I want out of my body but am held prisoner as I am assaulted without mercy, second by second so that time begins to blur.
I never feel as if I can adequately describe what I feel, what RSD does to me. What do you think? Did these words make an impact? Can you understand, a little? Why does RSD have to be so complicated? Other health conditions are easier to describe, but never RSD.
Despite the turmoil storms create for me, I still love them. Nothing can strip me of the pleasure of the elements and nature. It is something that lives in my blood. Why give it up for RSD when wringing the pleasure from it feels so much better? It is a choice and mine is to live. I choose to grab onto every moment of life and drain it dry. Life is made for living.
Today it clouded up, then the sky opened up and dumped buckets, complete with thunder and lightning. It was awesome. The wind was whipping the trees around, leaves on the big trees outside were flying through the air. I love storms because they are so elemental. They make me feel energized and alive. It's going to do it again tomorrow. I'm going to try and capture the rain and wind with the camera.
As much as I love them, I have to pay a big price now. It hurts me. No, it's more than that. A storm begins to build in my body as it does outside. The pain escalating until I want to curl up into a ball and whimper with the force of it. The thunder rolls through me, scooping out bone marrow as it moves through. The electricity from lightning in the air streaks along my nerve pathways sizzling and shocking me from head to toe. My muscles bunch and knot painfully as I tense. Then they smooth out as I concentrate on relaxing my body so I don't add to the pain. Sound makes me want to cover my ears to try and block it out. Each sound is separate, distinct, then jumbles together to produce pain. No one can touch me because my skin is so sensitive. The smallest puff of air across my skin has tears welling in my eyes. I want out of my body but am held prisoner as I am assaulted without mercy, second by second so that time begins to blur.
I never feel as if I can adequately describe what I feel, what RSD does to me. What do you think? Did these words make an impact? Can you understand, a little? Why does RSD have to be so complicated? Other health conditions are easier to describe, but never RSD.
Despite the turmoil storms create for me, I still love them. Nothing can strip me of the pleasure of the elements and nature. It is something that lives in my blood. Why give it up for RSD when wringing the pleasure from it feels so much better? It is a choice and mine is to live. I choose to grab onto every moment of life and drain it dry. Life is made for living.
Why Should I....
give a rat's arse why 90% of the population is apathetic? It's not just 90% of the population as a whole, it's only those who have RSD. Figured I should be more clear about that lest someone accuse me of being a people hater. I have to get this off my chest or it is going to eat me alive!
In May 2003, a month or so after being diagnosed with RSD, the writer side of me sprang into action. A really great idea popped into my Big Brain. I researched, I took notes, I emptied cartridge after cartridge of printer ink. In researching RSD I looked for how many people had it. I was shocked when I couldn't find them. I found guesstimates. The low side of 200,000(laughable), up to 8 million people with RSD in the United States. I looked for surveys. A couple had been done but still gave no concrete numbers. Not like there is with depression where x million people are dealing with it. MS, x million have it and x number are diagnosed each year. I could go on but I think you get the picture.
I was already mulling over my idea, a book about RSD. I wanted some concrete numbers for my book. I wanted to prove this was not a rare disorder. I didn't want it to be all facts and data but I need those numbers! I pulled out paper, grabbed a pen and made up my own survey. If no one else could take the time, I sure as heck would. I also wanted stories. The lives of those who have RSD telling how it affects their lives, their bodies, how it changed everything and how it affected those around them. I didn't want them to write a book, just their tale of RSD.
I was so excited to be doing something. I was going to conquer the world, bring awareness to all. This is why I got RSD. I found I had a purpose for the first time in my life. There was a reason I had survived this long. In 2 years, May 2003 to May 2005 I had a whopping total of 55 people take my RSD survey. A handful who wrote their stories. That's it. I was stunned and baffled. The internet lines fairly vibrated with the outrage of millions with RSD screaming. Wanting awareness, education and for RSD to be as well known as MS, breast cancer and others. Here I was on my way to doing it and a measly amount of people took the time to help me. Why?
I have no answer, even today. Six long years have gone by and I still can't understand. The same things are being said today in regard to RSD. I decided to try again. Maybe this time it would go better. I'm sorry to report it hasn't. I posted the results I have so far on a couple of boards. One board shows 33 people have viewed it, none have responded. The other board there are now over 200 views and not even a quarter of them have asked to take the survey. Apathy still has a choke hold while everyone sits around whining and complaining about the same thing. I have had 2 handfuls so far fill out the survey.
I'm tired of trying. I'm sick of people flapping their mouths, whining, moaning, complaining. I'm fed up with people who won't get off their ass and DO SOMETHING!
I want to publicly thank those who have taken it so far. Thank you all from the bottom of my heart. You are awesome and among the few who aren't just all talk. Thank you for every compliment you have given me for doing something. I don't feel special. I don't feel I am worthy of the heartfelt words. I will accept them with grace and remember each one of you forever. I will continue fighting because it's who I am. I will not give up no matter what because it's who I am. Thank you all for believing in me. Thank you for giving me a reason to never quit.
In May 2003, a month or so after being diagnosed with RSD, the writer side of me sprang into action. A really great idea popped into my Big Brain. I researched, I took notes, I emptied cartridge after cartridge of printer ink. In researching RSD I looked for how many people had it. I was shocked when I couldn't find them. I found guesstimates. The low side of 200,000(laughable), up to 8 million people with RSD in the United States. I looked for surveys. A couple had been done but still gave no concrete numbers. Not like there is with depression where x million people are dealing with it. MS, x million have it and x number are diagnosed each year. I could go on but I think you get the picture.
I was already mulling over my idea, a book about RSD. I wanted some concrete numbers for my book. I wanted to prove this was not a rare disorder. I didn't want it to be all facts and data but I need those numbers! I pulled out paper, grabbed a pen and made up my own survey. If no one else could take the time, I sure as heck would. I also wanted stories. The lives of those who have RSD telling how it affects their lives, their bodies, how it changed everything and how it affected those around them. I didn't want them to write a book, just their tale of RSD.
I was so excited to be doing something. I was going to conquer the world, bring awareness to all. This is why I got RSD. I found I had a purpose for the first time in my life. There was a reason I had survived this long. In 2 years, May 2003 to May 2005 I had a whopping total of 55 people take my RSD survey. A handful who wrote their stories. That's it. I was stunned and baffled. The internet lines fairly vibrated with the outrage of millions with RSD screaming. Wanting awareness, education and for RSD to be as well known as MS, breast cancer and others. Here I was on my way to doing it and a measly amount of people took the time to help me. Why?
I have no answer, even today. Six long years have gone by and I still can't understand. The same things are being said today in regard to RSD. I decided to try again. Maybe this time it would go better. I'm sorry to report it hasn't. I posted the results I have so far on a couple of boards. One board shows 33 people have viewed it, none have responded. The other board there are now over 200 views and not even a quarter of them have asked to take the survey. Apathy still has a choke hold while everyone sits around whining and complaining about the same thing. I have had 2 handfuls so far fill out the survey.
I'm tired of trying. I'm sick of people flapping their mouths, whining, moaning, complaining. I'm fed up with people who won't get off their ass and DO SOMETHING!
I want to publicly thank those who have taken it so far. Thank you all from the bottom of my heart. You are awesome and among the few who aren't just all talk. Thank you for every compliment you have given me for doing something. I don't feel special. I don't feel I am worthy of the heartfelt words. I will accept them with grace and remember each one of you forever. I will continue fighting because it's who I am. I will not give up no matter what because it's who I am. Thank you all for believing in me. Thank you for giving me a reason to never quit.
Laughing,Kids,Pain and Stuff
Yes, I'm going to cover it all tonight! You get a total 3 ring circus of laughing, stuff about kids, stuff about pain and just stuff. I find my brain is all over the place tonight. It's a whirlwind in there with debris flying everywhere. Sort of like a tornado. We can hope the flying cow won't make an appearance though.
Laughing. This happened because of my oh so adorable, bug eating, lizard catching fur babies. Ahhh yes, got to love them! 2 days ago now Shanni at a very BIG bug. How do I know? The wings. O.M.G!! They were some pretty big wings, see through with a black stripe on each one. No, I don't know what kind it was. I just know it was big by the size of them suckers. I did not catch this *gulp* eating thing until it was all gone. I noticed Fuzzy Butt and Furry Tail sitting close, huddled, in conference, casting furtive looks toward to sliding glass door. This always means they've got a "bug". I leaped out screaming, NO,OMG, NO NO NO! As Fuzzy Butt looks at me, innocence all over her cute face, "What?" *licks chops* "I'm not doing nothing" *licks chops* Let's say it again...O.M.G! GROSS. It was all gone, only 4 huge wings left lying on the ground, not so much as a big leg anywhere. *shudders in disgust* Oh yeah, gross.
Oh, the laughing part...that was today. They both come charging in the house, hot on the trail of something. I was starting to shake wondering what the hell they may have chased right into my house. Me, alone, scared of all things crawly and squirmy. Hoping, praying it was a lizard. I move shoes, *an undignified girly scream erupts, abruptly cut off* Yep, it's a lizard. Not a huge one, thank goodness. The way it shot out, right toward me is what produced the sound erupting from my mouth. I'm sooo not a girly girl either. My voice actually changed when I hit puberty, it got a little deeper. No, I am not kidding. No, I do not sound like a man. I have a sexy voice. Lots of people told me so. *sniffs haughtily* I somehow manage to get it out the door and set it free, sides heaving, sucking in air. Not me, the lizard.
Kids part. Kids are precious and special. It sucks being an empath sometimes. I lived the first 25 or so years of my life feeling different, but not knowing why. Not that it bothered me much really. I was a very shy girl. Make it painfully shy. I had red hair, freckles and glasses. 'Nuff said. Add what I felt inside, it produces a introverted people watching, nature loving, devoted reader, writer and trying not to get close to people. Holding myself aloof. *snorts* That didn't work all the time. It was easy to do with everyone in my family. Except my grandma, grandpa and mee maw who I adored till the day they died.
Ok, so more laughing came from reading this blog. What a ride this woman has been on, is still on, will always be on. I admire her, I laughed with her, I cried and my heart twisted. Each time I read about the loss of another woman's child, her struggles with a child who is sick, it has me saying, Thank the Goddess. I do what other mother's do and am thankful my children are ok, healthy. It's no disrespect to them, goodness no! It's just normal and entirely human. Each time I read the blogs of these women, I have the utmost admiration, respect and just plain awe of them. I wonder had anything been different would I be handling things as well? I can answer yes, I would. My children are my world and I am a tigress, a wolf. I have more to read on her journey to now. I start at the beginning and work my way to the present.
Pain is pain. The four letter cuss word I loathe and hate lately. The word that tries to drag me down, P.A.I.N. Nope, it won't. I refuse to let it no matter how bad it wants to be. I have better things to do, thankyouverymuch! I said to Gil earlier that I'm sick and tired of the pills. It seems on some days I am taking something every half an hour. It's not that often but days like yesterday and today, it feels like it. Tomorrow I'm sure I'll be over this. Pain will never, ever, in a million, billion years take me down.
My RSD survey I made up one month after I was diagnosed is struggling to find new life. The first time, May 2003 to May 2005 I had 55 people respond. It disgusts me how so many sit around whining, complaining, moaning about the need for awareness. The need to educate others about RSD. Show people it is not rare, show them this and that. Yet, when it comes down to DOING SOMETHING...they do NOTHING!! It makes me angry. The apathy they show. I guess whining is easier than doing. It's a survey for pete sake! I started a book at the time as well. A book about RSD which would feature some facts, squash myths, but most of all would show in vivid detail the millions of us with RSD. It would feature the real stories and voices of RSD. Sharing with the world how it affects us and our families. I received a handful of stories, literally a handful. This makes me even more angry. I'm not asking for your life story, just a piece of it. Maybe this time I'll get a better response. It doesn't appear that way, but I hope. I posted my results so far on 2 boards. Last time I look 18 people had read it on one board. The only 2 people who responded were ones who had already done it. The other board, 12 people had read it and no one responded. Apathy at it's finest everyone.
Laughing. This happened because of my oh so adorable, bug eating, lizard catching fur babies. Ahhh yes, got to love them! 2 days ago now Shanni at a very BIG bug. How do I know? The wings. O.M.G!! They were some pretty big wings, see through with a black stripe on each one. No, I don't know what kind it was. I just know it was big by the size of them suckers. I did not catch this *gulp* eating thing until it was all gone. I noticed Fuzzy Butt and Furry Tail sitting close, huddled, in conference, casting furtive looks toward to sliding glass door. This always means they've got a "bug". I leaped out screaming, NO,OMG, NO NO NO! As Fuzzy Butt looks at me, innocence all over her cute face, "What?" *licks chops* "I'm not doing nothing" *licks chops* Let's say it again...O.M.G! GROSS. It was all gone, only 4 huge wings left lying on the ground, not so much as a big leg anywhere. *shudders in disgust* Oh yeah, gross.
Oh, the laughing part...that was today. They both come charging in the house, hot on the trail of something. I was starting to shake wondering what the hell they may have chased right into my house. Me, alone, scared of all things crawly and squirmy. Hoping, praying it was a lizard. I move shoes, *an undignified girly scream erupts, abruptly cut off* Yep, it's a lizard. Not a huge one, thank goodness. The way it shot out, right toward me is what produced the sound erupting from my mouth. I'm sooo not a girly girl either. My voice actually changed when I hit puberty, it got a little deeper. No, I am not kidding. No, I do not sound like a man. I have a sexy voice. Lots of people told me so. *sniffs haughtily* I somehow manage to get it out the door and set it free, sides heaving, sucking in air. Not me, the lizard.
Kids part. Kids are precious and special. It sucks being an empath sometimes. I lived the first 25 or so years of my life feeling different, but not knowing why. Not that it bothered me much really. I was a very shy girl. Make it painfully shy. I had red hair, freckles and glasses. 'Nuff said. Add what I felt inside, it produces a introverted people watching, nature loving, devoted reader, writer and trying not to get close to people. Holding myself aloof. *snorts* That didn't work all the time. It was easy to do with everyone in my family. Except my grandma, grandpa and mee maw who I adored till the day they died.
Ok, so more laughing came from reading this blog. What a ride this woman has been on, is still on, will always be on. I admire her, I laughed with her, I cried and my heart twisted. Each time I read about the loss of another woman's child, her struggles with a child who is sick, it has me saying, Thank the Goddess. I do what other mother's do and am thankful my children are ok, healthy. It's no disrespect to them, goodness no! It's just normal and entirely human. Each time I read the blogs of these women, I have the utmost admiration, respect and just plain awe of them. I wonder had anything been different would I be handling things as well? I can answer yes, I would. My children are my world and I am a tigress, a wolf. I have more to read on her journey to now. I start at the beginning and work my way to the present.
Pain is pain. The four letter cuss word I loathe and hate lately. The word that tries to drag me down, P.A.I.N. Nope, it won't. I refuse to let it no matter how bad it wants to be. I have better things to do, thankyouverymuch! I said to Gil earlier that I'm sick and tired of the pills. It seems on some days I am taking something every half an hour. It's not that often but days like yesterday and today, it feels like it. Tomorrow I'm sure I'll be over this. Pain will never, ever, in a million, billion years take me down.
My RSD survey I made up one month after I was diagnosed is struggling to find new life. The first time, May 2003 to May 2005 I had 55 people respond. It disgusts me how so many sit around whining, complaining, moaning about the need for awareness. The need to educate others about RSD. Show people it is not rare, show them this and that. Yet, when it comes down to DOING SOMETHING...they do NOTHING!! It makes me angry. The apathy they show. I guess whining is easier than doing. It's a survey for pete sake! I started a book at the time as well. A book about RSD which would feature some facts, squash myths, but most of all would show in vivid detail the millions of us with RSD. It would feature the real stories and voices of RSD. Sharing with the world how it affects us and our families. I received a handful of stories, literally a handful. This makes me even more angry. I'm not asking for your life story, just a piece of it. Maybe this time I'll get a better response. It doesn't appear that way, but I hope. I posted my results so far on 2 boards. Last time I look 18 people had read it on one board. The only 2 people who responded were ones who had already done it. The other board, 12 people had read it and no one responded. Apathy at it's finest everyone.
RSD and Family Issues
I've seen a few posts from other RSD'ers on family issues. It is definitely a real issue for us and also one of the more troubling aspects of having RSD. In families that have always been close, the family issues can send you spiraling into depression. No one likes to be abandoned. Even less, a person hates to be ridiculed by those they love and made to feel like a junkie and/or faking it. This can cause someone to begin doubting themselves. Doubting the diagnosis and even worse, doubting what they feel physically.
Living life with RSD is hard enough without adding family issues on top of it. At a critical point in our lives, when we need the support of those we love the most, we feel betrayed. We need them to care enough, to love us enough, to click a link or tap a few words into the nearest search engine and read up on RSD. What is it, how it affects us, the symptoms, heck go read the entries on the nearest RSD board or two. Plenty of posts in forums to give anyone who cares to look a glimpse into our lives.
I don't have any solid answers to give to people on what to do or how to handle talking about RSD with the family. I do have experience with the not caring, not understanding bit. I feel they judge me from afar. They've made no effort to ask me about RSD, ask me where would be the best sites for information. My dad has made a couple of comments that make me laugh and infuriate me at the same time. My favorite one is I will become addicted/am addicted to the pain med. Another is one I've heard from other RSD'ers, I need to get out of the house more. *snort* Sure, that'll solve my problems I'm sure.
Here are some suggestions I've offered others with RSD on various boards in talking to family.
1) Print out The Spoon Theory story for your family. It's the first link which opens in a PDF document. I have loved this story since I read it. In a simple, yet moving way, it accurately describes the way we approach our days.
2) The website RSD Hope has a vast library of articles to read. This has been my most favorite site.
3) Another great website is RSDSA. They have built up a good library of articles on the various areas dealing with RSD, such as Children, Surgery and Treatments to name a few.
4) If you have family that live close, invite them to dinner. I suggest only a couple of people at a time, like your parents or a sibling and spouse, and talk to them. I do not suggest having a big family reunion to explain things. *grin* If your spouse is one of the ones who you'd like to understand, do the above and also schedule a night alone together, or a time after the kids are in bed, to sit down, talk and be open and honest.
5) Write a good old-fashioned letter or an email. Explain RSD to them in simple terms. Stick to the point and put in sites to go check out. Explain to your family why you can't plan anything ahead of time, and most importantly be honest about how you feel.
6) Getting your spouse or family member to come to the doctor with you is also good. Sometimes hearing something from a doctor carries more weight. It will help them understand faster, hopefully. I know some have "bad" doctors. The doctors who know nothing or next to nothing about RSD to begin with and have no interest in learning. If you, like me, have a good doctor who is knowledgeable about RSD and treatments, then try to have them come to one appointment. You could also ask your doctor at one visit if during the next visit he/she would take a few moments to explain to the spouse or family member a little about RSD. Since medication issues are there maybe he/she could also explain why you take the medications you do and the difference between addiction, tolerance and dependence.
I won't tell you any of this will solve all your problems. They won't magically understand RSD at once, but it's a beginning. It is a small step to open up communication with the family. Family issues can be complicated, even without RSD. With it, they can become even more so. There will be some who just don't "get it" and probably never will. Though it's easier said than done, you should not waste your thoughts or energy on them. You have a write to be upset and angry with them, but do not let it eat you up. It will only cause you pain, both physically and mentally. Stress is bad for us, we all know that. It's not good for anyone! For us though, it causes more pain. That is one thing we don't need more of.
All you can do is try to educate them, but in the end, they have to be the ones who make a decision. They will "get it", as much as they can without having RSD themselves, or they won't. I always hope family issues have a happy ending but sometimes there isn't one. Take comfort in knowing you are not alone in dealing with family issues. *gentle hugs to all who need it*
Living life with RSD is hard enough without adding family issues on top of it. At a critical point in our lives, when we need the support of those we love the most, we feel betrayed. We need them to care enough, to love us enough, to click a link or tap a few words into the nearest search engine and read up on RSD. What is it, how it affects us, the symptoms, heck go read the entries on the nearest RSD board or two. Plenty of posts in forums to give anyone who cares to look a glimpse into our lives.
I don't have any solid answers to give to people on what to do or how to handle talking about RSD with the family. I do have experience with the not caring, not understanding bit. I feel they judge me from afar. They've made no effort to ask me about RSD, ask me where would be the best sites for information. My dad has made a couple of comments that make me laugh and infuriate me at the same time. My favorite one is I will become addicted/am addicted to the pain med. Another is one I've heard from other RSD'ers, I need to get out of the house more. *snort* Sure, that'll solve my problems I'm sure.
Here are some suggestions I've offered others with RSD on various boards in talking to family.
1) Print out The Spoon Theory story for your family. It's the first link which opens in a PDF document. I have loved this story since I read it. In a simple, yet moving way, it accurately describes the way we approach our days.
2) The website RSD Hope has a vast library of articles to read. This has been my most favorite site.
3) Another great website is RSDSA. They have built up a good library of articles on the various areas dealing with RSD, such as Children, Surgery and Treatments to name a few.
4) If you have family that live close, invite them to dinner. I suggest only a couple of people at a time, like your parents or a sibling and spouse, and talk to them. I do not suggest having a big family reunion to explain things. *grin* If your spouse is one of the ones who you'd like to understand, do the above and also schedule a night alone together, or a time after the kids are in bed, to sit down, talk and be open and honest.
5) Write a good old-fashioned letter or an email. Explain RSD to them in simple terms. Stick to the point and put in sites to go check out. Explain to your family why you can't plan anything ahead of time, and most importantly be honest about how you feel.
6) Getting your spouse or family member to come to the doctor with you is also good. Sometimes hearing something from a doctor carries more weight. It will help them understand faster, hopefully. I know some have "bad" doctors. The doctors who know nothing or next to nothing about RSD to begin with and have no interest in learning. If you, like me, have a good doctor who is knowledgeable about RSD and treatments, then try to have them come to one appointment. You could also ask your doctor at one visit if during the next visit he/she would take a few moments to explain to the spouse or family member a little about RSD. Since medication issues are there maybe he/she could also explain why you take the medications you do and the difference between addiction, tolerance and dependence.
I won't tell you any of this will solve all your problems. They won't magically understand RSD at once, but it's a beginning. It is a small step to open up communication with the family. Family issues can be complicated, even without RSD. With it, they can become even more so. There will be some who just don't "get it" and probably never will. Though it's easier said than done, you should not waste your thoughts or energy on them. You have a write to be upset and angry with them, but do not let it eat you up. It will only cause you pain, both physically and mentally. Stress is bad for us, we all know that. It's not good for anyone! For us though, it causes more pain. That is one thing we don't need more of.
All you can do is try to educate them, but in the end, they have to be the ones who make a decision. They will "get it", as much as they can without having RSD themselves, or they won't. I always hope family issues have a happy ending but sometimes there isn't one. Take comfort in knowing you are not alone in dealing with family issues. *gentle hugs to all who need it*
Coping With RSD-Part 2
To continue last night's positivity and tips for coping with RSD. Life is hard but it doesn't have to be miserable. I struggle with the bad days like everyone else. Anyone with chronic pain walks a fine line between doing just enough and doing too much. Overdoing it leads to more pain and a few very miserable days. There is also a fine line between living the best life you can and saying to hell with it while letting the beast take over your life.
I not a depressed type person and never have been. I don't think any less of the ones who deal with depression. We all have ways of processing and handling the life we find ourselves in now. One very important thing I do for myself every month is I do wallow in it. I throw myself a big old-fashioned pity party. *grin* Yup, I take the day to wonder, ask what if, bitch and moan about the pain and RSD in general. I pamper myself more than usual and eat more junk food than normal. Unlike other people though I don't worry about weight. Due to my very weird, backward bodily systems I keep losing it and can't gain half an ounce no matter what I eat! But Pity Party Day is not the day to worry about that. If you want to give it another name, go ahead. It can an All About Me Day, a RSD Bashing Day, a Life Totally Sucks and Why Do I Have to Hurt so Darn Much Day! Let your imagination run away with naming and mark your calenders.
Meditation and visualization. I have done both of these things for a very long time. When the Beast hit me, I tried to keep it up. It's freaking hard to hold a thought most days much less zen out and walk across a black sand beach in my mind. I used to think I'd never do it again and came ><>
I not a depressed type person and never have been. I don't think any less of the ones who deal with depression. We all have ways of processing and handling the life we find ourselves in now. One very important thing I do for myself every month is I do wallow in it. I throw myself a big old-fashioned pity party. *grin* Yup, I take the day to wonder, ask what if, bitch and moan about the pain and RSD in general. I pamper myself more than usual and eat more junk food than normal. Unlike other people though I don't worry about weight. Due to my very weird, backward bodily systems I keep losing it and can't gain half an ounce no matter what I eat! But Pity Party Day is not the day to worry about that. If you want to give it another name, go ahead. It can an All About Me Day, a RSD Bashing Day, a Life Totally Sucks and Why Do I Have to Hurt so Darn Much Day! Let your imagination run away with naming and mark your calenders.
Meditation and visualization. I have done both of these things for a very long time. When the Beast hit me, I tried to keep it up. It's freaking hard to hold a thought most days much less zen out and walk across a black sand beach in my mind. I used to think I'd never do it again and came ><>
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