I need a friggin magic wand!! NO child should ever have to be in this much pain, and no parent should ever have to watch helplessly as their child suffers!!! And no child should have to watch a parent suffer because of them!!! This is not the natural course of life … THIS is RSD!! 20 years of dealing with the beast has taught me a lot about myself and my family. It has shown me how strong I can be in the face of adversity, but it also proves to me, time and again, that I can still crumble into a blubbering pile of poop at the face of my mother when she sees me in pain. I may be an almost 43 year old adult, but I am still her child. However, I contracted RSD as an adult and I was a total tomboy growing up. My mom’s biggest concern for me, back in the day, was whether or not we had enough Band-Aids, Bactine, and calamine lotion in the medicine cabinet, not when the next ketamine infusion was scheduled and could we make it that long!!
I look at moms like the Warrior Mama and my Godsister and all I can do is shake my head!! We are the same age-ish and all I know is feeling pain, just like their daughters; and all they know is what it looks like … and the looks of RSD are depressing, heartbreaking, gut-wrenching, stymie-ing, and, at times, awe-inspiring. And because their children are still at home, (duh!! they’re kids) the only thing these moms have to look at is the depressing crap!! So what do we, the “children” with RSD do?? We learn how to act, how to wear a mask of happiness, and how to lie. I, for one, never tell my mom how bad I really do hurt on most days … but I don’t live with my mom, so she’s not forced to see it, therefore I get away with my lies and half-truths.
On the flip-side, I look at my friends with healthy kids and think to myself, “you people had better thank your effin lucky stars that your kid is still able to play sports, go to school, run, jump, climb, ride comfortably in a car, eat, start modeling, go to birthday and holiday parties … all without fear of repercussion!!” Don’t get me wrong, I am grateful for every healthy child out there and I am a cheerleader to no end for *ALL* kids. But I can’t help but compare these families in my head. RSD needs awareness NOW!! RSD needs YOU!! These kids need YOU!! These parents need to know that normy parents are willing to empathize with their plight and are also willing to help ease the stress of having a child with chronic pain.
Now here’s the deal, never once have I ever asked for sympathy. Just the opposite, in fact. When someone starts spewing sympathetic rhetoric, I walk away. I have to. They don’t know!! They think they’re being helpful by showing sympathy but in reality, they’re making us feel worse, physically and emotionally, with all of their “oh you poor thing” or “I feel terrible for you” or “I wish I could make it go away” or “I wish I could help you!” You know what, SO. DO. WE!! But, in the words of my mother, “if wishes were horses, we’d all take a ride.” (her own version of acceptance) ... and I’m pretty sure that every RSDer, regardless of age, will agree with me … we don't want or need your pity!!! We want and need you to make a difference!!
So to all of you normies out there that have uttered these words, here is your chance to help me, the Penguin, the Godniece, and the 5 million other RSDers!!
SUPPORT THE 2nd ANNUAL CRAZY SOCK DAY on January 24!!! 1 week from TODAY!!!
While out shopping for your own crazy socks to wear on January 24, 2012, purchase an extra pair or 2!! Send Laurie (the Warrior Mama) or Jenn (me) a picture(s) of the un-worn socks along with the size and value. (lad4587@gmail.com or havefaith_91@yahoo.com) Spirit Sparkplugs will host an online auction for all of them and forward you the winning bidder’s information so that you can send the socks directly to the winner. This will cost you the price of the socks and shipping. The proceeds for this auction will go Spirit Sparkplugs in the Penguin’s name. The auction will close at the end of January 2012.
For more information about the non-profit organization, Spirit Sparkplugs, visit www.spiritsparkplugs.com. They are committed to helping children who face medical difficulties of all kinds around the world.
I still have faith that RSD awareness will be raised, but sometimes even my faith falters and I need to be reminded of why I fight. Having the normy people that love me and care about me the most stand beside me, and fight with me is just the boost I need to feel right now. Don’t tell me, SHOW me!! Please!!!
Raising Awareness for RSD (and Ziggi's)
The Power of Orange
Tuesday, January 17, 2012
Monday, January 16, 2012
A Brand New Day
I had to use my Ketamine nasal spray last night and I’m not happy about it. I spent way too many years in a narcotic induced fog … to the point where it just has zero appeal to me anymore. I do understand and accept that there will be times in my RSDism where I have to use the heavy drugs, but that doesn’t mean that I have to like it. It’s all about fighting the good fight, whatever it takes, and never ever ever giving up!! And “tomorrow” is always a new day!! Pain is something with which every person in the world is familiar. It is all part of the balance of life. Without pain, there is no pleasure because we have nothing to which we can compare it. Today’s pleasure is brought to you courtesy of last night’s pain. I awoke still fuzzy in the brain but knew I could count on Bertha to clear those cobwebs. (Bertha = my coffeemaker, in case you forgot) However, I was so distracted by the pain and the drugs last night, that I forgot to set her up and press the timer. I really don’t like having to wait those 5 excruciating minutes while that 1st cup of tar percolates. But my 2nd pot is brewing now and spurring me into action for the day!! God bless caffeine and all she has to offer!!
Today begins crunch-time for the 2nd Annual Crazy Sock Day. 8 days to go and I have just finish writing press releases for my local newspaper as well for the local paper of the Penguin and Warrior Mama in Florida. I love RSD awareness events!! They motivate me more than anything else on the planet. Surprising, no? More than my family, more than my friends, more than Kiva. Informing the world of this devastating "dis-ease" is paramount to me. Of course I want a cure too, but there won’t be a cure until the awareness is out there. Everyone has heard of cancer, diabetes, MS, muscular dystrophy, fibromyalgia, Chrone’s disease, autism, and the list goes on because there are … wait for it … television commercials to help identify the diseases!! But for RSD/CRPS there is nothing!!! *NOTHING*!!! And according to doctors and the McGill Pain Index, RSD is more painful than all of them!! There are YouTube videos galore about RSD but nothing has gone mainstream and I have made it my mission to change that. (if you look to your right on my blog page, you’ll see video links. The picture of the young woman holding a handwritten card is the most helpful vid I’ve watched so far.) But we need to get out there and put it in people’s faces. I cannot do this alone and I welcome any and all help from my fellow RSDers as well as my normy friends.
How can YOU help spread awareness with me?? Message me on Facebook, email me at havefaith_91@yahoo.com, find me on Twitter @painbedamned. Let’s start 2012 with recruiting every person we know to wear crazy socks on January 24. If you’re a teacher, make it a classroom event. (Houdini is!!) If you’re a boss, make it mandatory for your employees (my dad is!!). If you’re in public service, make sure everyone you come into contact with notices your socks (1 of my cop-friends is!!). Make sure everyone knows that you’re doing it for 12 year old Melanie and RSDers everywhere around the world. Make it a statement!!!!!!!!! Raise awareness!!!!!
I have faith that CSD2 will be bigger and better than last year’s event!! I will make it happen. I also have faith that each and every one of you will help me too!! WHATEVER IT TAKES, y’all!! Let’s do this!!
Today begins crunch-time for the 2nd Annual Crazy Sock Day. 8 days to go and I have just finish writing press releases for my local newspaper as well for the local paper of the Penguin and Warrior Mama in Florida. I love RSD awareness events!! They motivate me more than anything else on the planet. Surprising, no? More than my family, more than my friends, more than Kiva. Informing the world of this devastating "dis-ease" is paramount to me. Of course I want a cure too, but there won’t be a cure until the awareness is out there. Everyone has heard of cancer, diabetes, MS, muscular dystrophy, fibromyalgia, Chrone’s disease, autism, and the list goes on because there are … wait for it … television commercials to help identify the diseases!! But for RSD/CRPS there is nothing!!! *NOTHING*!!! And according to doctors and the McGill Pain Index, RSD is more painful than all of them!! There are YouTube videos galore about RSD but nothing has gone mainstream and I have made it my mission to change that. (if you look to your right on my blog page, you’ll see video links. The picture of the young woman holding a handwritten card is the most helpful vid I’ve watched so far.) But we need to get out there and put it in people’s faces. I cannot do this alone and I welcome any and all help from my fellow RSDers as well as my normy friends.
How can YOU help spread awareness with me?? Message me on Facebook, email me at havefaith_91@yahoo.com, find me on Twitter @painbedamned. Let’s start 2012 with recruiting every person we know to wear crazy socks on January 24. If you’re a teacher, make it a classroom event. (Houdini is!!) If you’re a boss, make it mandatory for your employees (my dad is!!). If you’re in public service, make sure everyone you come into contact with notices your socks (1 of my cop-friends is!!). Make sure everyone knows that you’re doing it for 12 year old Melanie and RSDers everywhere around the world. Make it a statement!!!!!!!!! Raise awareness!!!!!
I have faith that CSD2 will be bigger and better than last year’s event!! I will make it happen. I also have faith that each and every one of you will help me too!! WHATEVER IT TAKES, y’all!! Let’s do this!!
Thursday, January 12, 2012
The Corporeality of Trust
In general, I do not trust people easily anymore, men or women. I used to have blind faith where humans were concerned, always wanting to see the best in them, but I have allowed myself to be in the position to be let down too many times. This is also the reason that I have such a hard time asking for help. I don't ask for help often and it takes a lot for me to swallow my pride and admit that I need it. My family members (and Bosley too) are pretty solid with the physical stuff when I ask, but my most common help request of my friends has to be "distract me." Even though I'm not in the mood to be around people on bad pain days, I still need help getting my mind off of the pain. I can honestly say that I have 1 friend in my life that I can trust to go out of their way help me, mentally and emotionally. I have friends that mean well, and friends that can help when it's convenient, and friends that think a distraction is an invitation to dump their shit on my doorstep (sorry Mom, but you know it's true) ... and this is where my lack of trust comes into play. This one friend always offers me a respite from the annoying pain. She tells me (via texts and Voxer) about what's going on with her, what movie she just saw, what book she just read, what guy she just went on a date with, what work projects she's tweaking, what words failed on Family Feud Fast Money Rounds, etc. She asks me about what's going on in my world, but never asks me to dwell on the pain. She asks about the other stuff!! She understands that the pain is always there 24/7, but she knows that sometimes I just need to redirect my focus for a while until I can get better control of it. (God bless that CaliAngel of mine!!)
Marilyn Monroe is often quoted as saying, "... if you can't handle me at my worst, then you sure as hell don't deserve me at my best." ... and I feel the exact same way!! But there is more to that quote. The full quote is, "I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best." Here is how the artist formerly known as Norma Rae and I compare: I am selfish when it comes to protecting myself; I am a little impatient ... but I try to stifle it as much as possible or make a joke out of it; I am definitely a little insecure ... ima girl, hello!!; I learn from the mistakes I've made; I'm not out of control (anymore); and on bad pain days, I think that I'm definitely hard to handle. And if people can't or won't help with those bad days, why should I keep the Fair Weather Flockers around to enjoy the good days with me?? They sure as hell didn't help me get to those good days, so they shouldn't get to be a part of them. Right?? Right!!
I may be tough, sassy, classy, sarcastic, often over-opinionated, loud, with a twisted brain, but I am still a girl ... with a few girl-ish insecurities, a couple abandonment issues ... and RSD. I am not about to keep anyone around, or let anyone else into my world who has the potential to make any of those any worse than they already are. Just because I give people a chance (or a 2nd chance, or a 3rd), absolutely does not mean that I trust them, it just means that I want to be able to trust them. It also means that I want to give them every opportunity to earn my trust. But there are times when I run out of chances to give (and painkillers to take) and the healthiest thing for me to do is to remove myself from the situation. Stress breeds pain in my world ... and pain breeds more pain ... and after 20+ years of dealing with it, I have found that I need people in my inner circle who are equipped to help protect me from more pain, physically, mentally, and emotionally. Friends will come and go and friends will try to help, and hopefully some will succeed, but until my trust has been earned, I'll keep my barriers up, my outer circle wide, and I'll keep quoting Marilyn ... " “I am good, but not an angel. I do sin, but I am not the devil. I am just a small girl in a big world trying to find someone to love.” (or in my case, trust too)
Today my faith lies in the realization of what is and what is not. My corporeality is my reality and my reality requires proof of sincerity, not sympathy. Stand up for yourselves, RSDers!! Stand up for the ones that know you and the ones that you trust. Protect yourselves, and don't trust blindly. Make people earn it!! The ones that are worth it, will do it without hesitation!! Those are the ones that deserve our best!!
Friday, January 6, 2012
On a Mission from Gahd … and the Penguin
About 12 years ago, I met an amazing woman named Dollie. I mention her by name only because she has since passed away. She had RSD and diabetes. She had developed a blood clot in her leg and it moved to her heart before the doctors could stop it. She was a smart and goofy lady and she was also the first dual-diagnosis-advocate I’d ever met.
I worked with her to make packets of RSD information to give to non-RSD doctors, nurses, therapists, anyone that asked for more information and even for those too ignorant to admit their lack of knowledge. I remember leaving her house with 50 of these packets one day, only to return four days later for more.
It was the week that I was “auditioning” a dermatologist for my newly developing case of psoriasis (thank you RSD), as well as the week of the I‘ve-been-on-heavy-painkillers-for-over-8-yrs-trip to the gastroenterologist. I gave the packets to the doctors, nurses, receptionists, technicians, therapists … whatever I could do to raise awareness. And it paid off … for the most part!! The Derma-Dude got my little patches of psoriasis under control and had taken the info in the packet to heart. He would tell me where he would have to touch next and he gave me a few seconds to prepare for it. My PT and OT loved the packets!! They shared them with the other therapists in their office as well as the in-house therapists at the hospital. But not every medical professional received the packet with that much enthusiasm. My gastroenterologist (who will now be known as The Gut Buster) was the worst. He handed the packet back to me, telling me that he didn’t need to read it because I could tell him everything that was in it. This creep (albeit very good his particular discipline) tried to schedule my colonoscopy to take place in their office the next day. I told him that we needed to do it at the hospital with my anesthesiologist present to sedate me and then give me the nerve blocks to combat the added pain that the procedure would surely provide. He laughed at me. Yes, laughed AT me. But because I stuck to my guns about it, he finally agreed. Even all of these years later, he has still not apologized to me, but at my follow-up appointment with him, I saw the packet that I had given my anesthesiologist in the Gut Buster’s file on me. (I gave the anesth. a packet just to show him what I was up to.)
I need to tell you what re-lit this fire under my tookis!! While stalking the FB page of the Warrior Mama this morning for updates on the Penguin, (a nice little shout-out to her facial feeding tube stickers) I read her post about a nurse who walked into the Penguin’s room last night, unaware of RSD, and touched the girl’s socked left leg. (The Penguin is in the hospital for her temporary gastric stimulator installation.) From the way the post sounded, the Penguin’s scream could be heard throughout the floor. And then, while discussing the incident with the morning nurse, she questioned the use of Ketamine as a treatment for the young Penguin. (Lady, she’s there for her tummy, not to have you question her RSD specialist!!) We need to stop this ignorance!! Hence, packets!!
So many details and treatments and medications have changed and been added to the plethora of ever-developing information on RSD that I cannot re-use the packets from 12 years ago, but I can use them as a guideline to create a new one. When I am done, I will make these packets available here for you to print out and take with you to your appointments to give to your “specialists, et al.” … and I’m sure I can grab a few of my other Bloggers to post them as well.
BUT … I cannot do this alone. I need YOUR help, RSDers and Caregivers!!! If you have ANY information that you think needs to be included in the packet, please email me at havefaith_91@yahoo.com.
I have faith that we will raise even more awareness this year. Despite the heartbreaks and setbacks, as long as we band together, even from across the miles, we can make a difference, make people aware, and give ourselves and other RSDers hope in the process!!
I worked with her to make packets of RSD information to give to non-RSD doctors, nurses, therapists, anyone that asked for more information and even for those too ignorant to admit their lack of knowledge. I remember leaving her house with 50 of these packets one day, only to return four days later for more.
It was the week that I was “auditioning” a dermatologist for my newly developing case of psoriasis (thank you RSD), as well as the week of the I‘ve-been-on-heavy-painkillers-for-over-8-yrs-trip to the gastroenterologist. I gave the packets to the doctors, nurses, receptionists, technicians, therapists … whatever I could do to raise awareness. And it paid off … for the most part!! The Derma-Dude got my little patches of psoriasis under control and had taken the info in the packet to heart. He would tell me where he would have to touch next and he gave me a few seconds to prepare for it. My PT and OT loved the packets!! They shared them with the other therapists in their office as well as the in-house therapists at the hospital. But not every medical professional received the packet with that much enthusiasm. My gastroenterologist (who will now be known as The Gut Buster) was the worst. He handed the packet back to me, telling me that he didn’t need to read it because I could tell him everything that was in it. This creep (albeit very good his particular discipline) tried to schedule my colonoscopy to take place in their office the next day. I told him that we needed to do it at the hospital with my anesthesiologist present to sedate me and then give me the nerve blocks to combat the added pain that the procedure would surely provide. He laughed at me. Yes, laughed AT me. But because I stuck to my guns about it, he finally agreed. Even all of these years later, he has still not apologized to me, but at my follow-up appointment with him, I saw the packet that I had given my anesthesiologist in the Gut Buster’s file on me. (I gave the anesth. a packet just to show him what I was up to.)
I need to tell you what re-lit this fire under my tookis!! While stalking the FB page of the Warrior Mama this morning for updates on the Penguin, (a nice little shout-out to her facial feeding tube stickers) I read her post about a nurse who walked into the Penguin’s room last night, unaware of RSD, and touched the girl’s socked left leg. (The Penguin is in the hospital for her temporary gastric stimulator installation.) From the way the post sounded, the Penguin’s scream could be heard throughout the floor. And then, while discussing the incident with the morning nurse, she questioned the use of Ketamine as a treatment for the young Penguin. (Lady, she’s there for her tummy, not to have you question her RSD specialist!!) We need to stop this ignorance!! Hence, packets!!
So many details and treatments and medications have changed and been added to the plethora of ever-developing information on RSD that I cannot re-use the packets from 12 years ago, but I can use them as a guideline to create a new one. When I am done, I will make these packets available here for you to print out and take with you to your appointments to give to your “specialists, et al.” … and I’m sure I can grab a few of my other Bloggers to post them as well.
BUT … I cannot do this alone. I need YOUR help, RSDers and Caregivers!!! If you have ANY information that you think needs to be included in the packet, please email me at havefaith_91@yahoo.com.
I have faith that we will raise even more awareness this year. Despite the heartbreaks and setbacks, as long as we band together, even from across the miles, we can make a difference, make people aware, and give ourselves and other RSDers hope in the process!!
Wednesday, January 4, 2012
In Search Of …
Son of a…!!! … Shut the front door!!! … GERSHWIN!!! (new creative cuss word) … Holy puss buckets!!! … OOOWWWWWWIIIEEEEEEEEEEEE!!!!!!!!!!!!
I have been seeing the same Massage Therapist, A.B., for the last 2 years and I LOVE her … but she moved out of state at the end of the year. WAAAAHHHHH!!! She listened to me and to my body. She’d start each section with a light touch and gradually increase her strength so as not to cause me more pain. She was the one that told me that a massage should never be the cause of pain … It was hard not to love this girl!! She (not the company she worked for) did research on RSD so that she could continue to help me. She was a gem and I will miss her more than my gall bladder!! Yesterday, I called the mass-massage factory, where I found A.B. back in ‘09, to begin arduous task of finding someone to replace the irreplaceable … this is as grueling of a process as finding a new pain management doc, and heartbreaking to boot!!
I requested a massage therapist with a gentle but firm touch. What I got was anything but!! The woman that came out to greet me and introduce herself was a bitty little thing. She glanced over my paperwork, looked up at me (literally) and said, “So you need a deep tissue/sports massage?” My response? “Um NO!!! Where does it say that?? I need a Swedish massage with desensitizing techniques and a focus on the knots and spasms in my neck and shoulders without causing flares” (my standard request). She didn’t ask what a flare was or glance back at my chart to see what I might have been talking about. As a matter of fact, her tiny personage bowed up to me. “Oh, ok!! I can do that!!“ She was too agreeable (RED FLAG!!) and actually told me, to my face, that she could “fix me right up” (RED FLAG #2!!). We meandered through the maze of open and closed doors to treatment rooms until we got to our destination. She asked me all of the standard, first meeting questions and when I told her that I have RSD and that I usually scare therapists once I’ve told them what it is, she replied, “Well that don’t scare me!” (RED FLAGS #3 AND #4!!!) ... FYI … If you are any kind of medical professional and RSD does not scare you, you are an ignorant, cocky, egotistical, self-centered braggart that only cares about the paycheck, not the patients. And if you have poor grammar on top of that, you are only making yourself sound more ignorant and, yes, I’ll say it, stupid!!! But the audition process had to start somewhere, and I do believe in not judging people and giving everyone a chance to prove themselves.
OMGosh … My hand to God, this woman was evil!! After 10 minutes of desensitization work … and after 15 minutes of what I can only describe as “hellish abuse,” I stopped her and asked her to leave the room. Even after I had asked/told her not to use her elbows along my spine and shoulder blades, she kept doing it, telling me that this was the only way she was going to able to get through the knots. I don’t have to lie there and take that!! As soon as the she shut the door behind her, I started bawling. I couldn’t help it and I couldn’t stop it. She tried the 2 minute check-back, still crying … 5 minutes, still crying … 10 minutes, she checked on me again. I had dried my eyes and gotten dressed. Her jaw dropped so much I could’ve sworn that if I made just 1 can-can kick, I would have lost my size 10 shoe in her mouth … without pointing my toes.
Not wanting to hurt her feelings (ima softie like that sometimes) I chose my words carefully and said, “You did the best you could.” I paid the $49 and gave the hillbilly harpy $3 for a tip … the 10 minutes of desensitization did feel good. I also spoke with the supervisor and explained that if the pain didn’t subside, I would be calling back the next morning for a refund … GUESS WHAT!?!? … I’ll be calling her in about 30 minutes.
Even though I was relegated to the prone position on the heating pad for the rest of the day, I have to give a HUGE shout-out to some friends for just making me laugh through the pain … Cali Angel (even though it started out as crazy-a’d drama -very glad the Kid is ok tho, btw- it turned into almost peeing my pants laughing), Houdini (he appeared just in time to help distract me and he left when he knew that I just needed to cry alone … unplanned … unexpected … unbelievable!!), Warrior Mama (even when she’s stressed, she’ll say something at which I can’t help but giggle … frozen shoebox!! Haha ... still going on that one too!!), TTO - The Tall One (who just can’t make up the stuff that happens in his world!!), and Kiva (that marathon version of “take a dummy for a walk” was freaking hysterical!!) ... ok, Take A Dummy For A Walk is when she chases her tail, catches it, barrel rolls with it, and side steps through the whole house ... with her tail in her mouth. I'm sure that it's some form of doggie dementia, but i just can't bring myself to stop her!!
Pain, heartache, and confusion could have ruined my day yesterday, but I am sticking to my resolution of letting my mood fight my pain and it’s working!! I’m still dragging my heating pad around with me this morning (along with 2 extension cords) but I have faith that the pain will ease in time. Today’s goals are to take a shower, stay affixed to the heating pad, and fold 6 loads of laundry … notice I said nothing about putting the clothes away … I’m not looking for a miracle today, honest!! :D
I have been seeing the same Massage Therapist, A.B., for the last 2 years and I LOVE her … but she moved out of state at the end of the year. WAAAAHHHHH!!! She listened to me and to my body. She’d start each section with a light touch and gradually increase her strength so as not to cause me more pain. She was the one that told me that a massage should never be the cause of pain … It was hard not to love this girl!! She (not the company she worked for) did research on RSD so that she could continue to help me. She was a gem and I will miss her more than my gall bladder!! Yesterday, I called the mass-massage factory, where I found A.B. back in ‘09, to begin arduous task of finding someone to replace the irreplaceable … this is as grueling of a process as finding a new pain management doc, and heartbreaking to boot!!
I requested a massage therapist with a gentle but firm touch. What I got was anything but!! The woman that came out to greet me and introduce herself was a bitty little thing. She glanced over my paperwork, looked up at me (literally) and said, “So you need a deep tissue/sports massage?” My response? “Um NO!!! Where does it say that?? I need a Swedish massage with desensitizing techniques and a focus on the knots and spasms in my neck and shoulders without causing flares” (my standard request). She didn’t ask what a flare was or glance back at my chart to see what I might have been talking about. As a matter of fact, her tiny personage bowed up to me. “Oh, ok!! I can do that!!“ She was too agreeable (RED FLAG!!) and actually told me, to my face, that she could “fix me right up” (RED FLAG #2!!). We meandered through the maze of open and closed doors to treatment rooms until we got to our destination. She asked me all of the standard, first meeting questions and when I told her that I have RSD and that I usually scare therapists once I’ve told them what it is, she replied, “Well that don’t scare me!” (RED FLAGS #3 AND #4!!!) ... FYI … If you are any kind of medical professional and RSD does not scare you, you are an ignorant, cocky, egotistical, self-centered braggart that only cares about the paycheck, not the patients. And if you have poor grammar on top of that, you are only making yourself sound more ignorant and, yes, I’ll say it, stupid!!! But the audition process had to start somewhere, and I do believe in not judging people and giving everyone a chance to prove themselves.
OMGosh … My hand to God, this woman was evil!! After 10 minutes of desensitization work … and after 15 minutes of what I can only describe as “hellish abuse,” I stopped her and asked her to leave the room. Even after I had asked/told her not to use her elbows along my spine and shoulder blades, she kept doing it, telling me that this was the only way she was going to able to get through the knots. I don’t have to lie there and take that!! As soon as the she shut the door behind her, I started bawling. I couldn’t help it and I couldn’t stop it. She tried the 2 minute check-back, still crying … 5 minutes, still crying … 10 minutes, she checked on me again. I had dried my eyes and gotten dressed. Her jaw dropped so much I could’ve sworn that if I made just 1 can-can kick, I would have lost my size 10 shoe in her mouth … without pointing my toes.
Not wanting to hurt her feelings (ima softie like that sometimes) I chose my words carefully and said, “You did the best you could.” I paid the $49 and gave the hillbilly harpy $3 for a tip … the 10 minutes of desensitization did feel good. I also spoke with the supervisor and explained that if the pain didn’t subside, I would be calling back the next morning for a refund … GUESS WHAT!?!? … I’ll be calling her in about 30 minutes.
Even though I was relegated to the prone position on the heating pad for the rest of the day, I have to give a HUGE shout-out to some friends for just making me laugh through the pain … Cali Angel (even though it started out as crazy-a’d drama -very glad the Kid is ok tho, btw- it turned into almost peeing my pants laughing), Houdini (he appeared just in time to help distract me and he left when he knew that I just needed to cry alone … unplanned … unexpected … unbelievable!!), Warrior Mama (even when she’s stressed, she’ll say something at which I can’t help but giggle … frozen shoebox!! Haha ... still going on that one too!!), TTO - The Tall One (who just can’t make up the stuff that happens in his world!!), and Kiva (that marathon version of “take a dummy for a walk” was freaking hysterical!!) ... ok, Take A Dummy For A Walk is when she chases her tail, catches it, barrel rolls with it, and side steps through the whole house ... with her tail in her mouth. I'm sure that it's some form of doggie dementia, but i just can't bring myself to stop her!!
Pain, heartache, and confusion could have ruined my day yesterday, but I am sticking to my resolution of letting my mood fight my pain and it’s working!! I’m still dragging my heating pad around with me this morning (along with 2 extension cords) but I have faith that the pain will ease in time. Today’s goals are to take a shower, stay affixed to the heating pad, and fold 6 loads of laundry … notice I said nothing about putting the clothes away … I’m not looking for a miracle today, honest!! :D
Tuesday, January 3, 2012
Rallying The Troops
For the next three weeks, I will probably write and/or mention quite a bit about the 2nd Annual Crazy Sock Day celebration that will be taking place, worldwide, on January 24, 2012. So that you don’t feel left out, here’s why…
99% of all RSDers have a “that day” … that infamous day when their lives changed forever … the day that they developed RSD. Some RSDers curse that day, others celebrate it, but everyone dreads their RSD anniversary. It means that another year has gone by without a cure or any sign of relief. It means that 365 more days were suffered through, and most of those were streaked with tears but masked by smiles. This is the very reason why I think every RSDer should ‘celebrate’ their day!! 365 more days have been SURVIVED!!!
Down in Florida, it is no different for little 12 year old Melanie Dickens. While at a friend’s birthday party on January 24, 2010, Melanie was walking on stilts along with her friends when she fell and sprained her left ankle. After the sprain had healed, the pain remained … the diagnosis, RSD/CRPS.
Just to give you a quick little refresher course on the beast, RSD/CRPS is caused by trauma to a nerve or nerves, usually in a hand or foot. It can be brought on by a sprain, fracture, and surgical incision; or even something as insignificant as slamming a finger in a door or stubbing a toe. It can also happen as the result of another disease, such as shingles. RSD has been described as a condition characterized by pain that is over and beyond the normal amount of pain that accompanies the initial injury, and when the injured limb has healed, the out of proportion pain is still prominent. In addition to the pain, other symptoms include, but are not limited to: blood flow deviations that change the color, temperature and/or skin thickness of the affected area; loss of movement (range of motion), atrophy (disfigurement), increased sweating, and dystonia (uncontrollable muscle spasms and shakes) of that same area. RSD/CRPS is manageable but not controllable, nor is there a cure for the disease … and it can spread, within an individual’s body, to the other limbs, core, face, and even organs. RSD/CRPS can also lay the foundation for, and incite, numerous other autoimmune diseases. Doctors have ranked RSD/CRPS higher on the pain scale than amputation and childbirth.
Once diagnosed, Melanie began a rigorous series of physical therapies, one of which was the desensitization process of putting on a knee sock and taking it off, repeatedly. Eventually Melanie was able to tolerate the sock and began to look at is a her safety net. It protected her leg from the pain spiking Florida breezes and hid the often off-putting mild discoloration, while still allowing her to wear shorts in the warmer Florida climate. But white tube socks were too boring for this mini-fashionista, and her mom knew this. The only answer here was “crazy socks.” Tye-dyed, striped, cartoon character splattered, multi-geometrical, you name, it, Melanie now wears it with pride.
Question: How do you UN-depress a pre-teen with a painfully debilitating disease?? If you are Melanie’s mother, Laurie, you round up every family member, every RSDer and RSD caregiver that you know, every family friend you can track down and you ask them to wear the craziest socks they can find on January 24, 2011. I had the privilege and honor of being one of the first people to join the 1st Annual Crazy Sock Day craze and I was amazed at all of the pictures that were posted on Facebook showing their support for Melanie. So when Laurie asked me if I would spearhead the 2nd Annual Cray Sock Day, I was even more honored.
Melanie’s RSD is still in her left leg, but it has also spread into her abdominal organs causing Gastroperesis. Up until a couple of months ago, she was unable to keep any solid food down and the pain of throwing up was unbearable, so she had to have a feeding tube threaded through her nose and into her stomach. Today she will be having a surgical procedure to have a temporary gastric stimulator put in place to “wake up her tummy.”
I will keep you updated on her progress, but I challenge you, RIGHT NOW, to either find, buy or make the craziest socks you can imagine and wear them on January 24, 2012 (3 weeks from today). And if you’re on Facebook, feel free to search for the public group “2nd Annual Crazy Sock Day” and join in the celebration of a young lady with the spirit of a warrior while helping us to raise awareness for all who suffer from RSD!! Crazy socks are great conversation starters and when someone comments on yours, you can say, “it’s for Melanie and RSD.”
Have faith people … If a 12 year old can do it, so can you!!
99% of all RSDers have a “that day” … that infamous day when their lives changed forever … the day that they developed RSD. Some RSDers curse that day, others celebrate it, but everyone dreads their RSD anniversary. It means that another year has gone by without a cure or any sign of relief. It means that 365 more days were suffered through, and most of those were streaked with tears but masked by smiles. This is the very reason why I think every RSDer should ‘celebrate’ their day!! 365 more days have been SURVIVED!!!
Down in Florida, it is no different for little 12 year old Melanie Dickens. While at a friend’s birthday party on January 24, 2010, Melanie was walking on stilts along with her friends when she fell and sprained her left ankle. After the sprain had healed, the pain remained … the diagnosis, RSD/CRPS.
Just to give you a quick little refresher course on the beast, RSD/CRPS is caused by trauma to a nerve or nerves, usually in a hand or foot. It can be brought on by a sprain, fracture, and surgical incision; or even something as insignificant as slamming a finger in a door or stubbing a toe. It can also happen as the result of another disease, such as shingles. RSD has been described as a condition characterized by pain that is over and beyond the normal amount of pain that accompanies the initial injury, and when the injured limb has healed, the out of proportion pain is still prominent. In addition to the pain, other symptoms include, but are not limited to: blood flow deviations that change the color, temperature and/or skin thickness of the affected area; loss of movement (range of motion), atrophy (disfigurement), increased sweating, and dystonia (uncontrollable muscle spasms and shakes) of that same area. RSD/CRPS is manageable but not controllable, nor is there a cure for the disease … and it can spread, within an individual’s body, to the other limbs, core, face, and even organs. RSD/CRPS can also lay the foundation for, and incite, numerous other autoimmune diseases. Doctors have ranked RSD/CRPS higher on the pain scale than amputation and childbirth.
Once diagnosed, Melanie began a rigorous series of physical therapies, one of which was the desensitization process of putting on a knee sock and taking it off, repeatedly. Eventually Melanie was able to tolerate the sock and began to look at is a her safety net. It protected her leg from the pain spiking Florida breezes and hid the often off-putting mild discoloration, while still allowing her to wear shorts in the warmer Florida climate. But white tube socks were too boring for this mini-fashionista, and her mom knew this. The only answer here was “crazy socks.” Tye-dyed, striped, cartoon character splattered, multi-geometrical, you name, it, Melanie now wears it with pride.
Question: How do you UN-depress a pre-teen with a painfully debilitating disease?? If you are Melanie’s mother, Laurie, you round up every family member, every RSDer and RSD caregiver that you know, every family friend you can track down and you ask them to wear the craziest socks they can find on January 24, 2011. I had the privilege and honor of being one of the first people to join the 1st Annual Crazy Sock Day craze and I was amazed at all of the pictures that were posted on Facebook showing their support for Melanie. So when Laurie asked me if I would spearhead the 2nd Annual Cray Sock Day, I was even more honored.
Melanie’s RSD is still in her left leg, but it has also spread into her abdominal organs causing Gastroperesis. Up until a couple of months ago, she was unable to keep any solid food down and the pain of throwing up was unbearable, so she had to have a feeding tube threaded through her nose and into her stomach. Today she will be having a surgical procedure to have a temporary gastric stimulator put in place to “wake up her tummy.”
I will keep you updated on her progress, but I challenge you, RIGHT NOW, to either find, buy or make the craziest socks you can imagine and wear them on January 24, 2012 (3 weeks from today). And if you’re on Facebook, feel free to search for the public group “2nd Annual Crazy Sock Day” and join in the celebration of a young lady with the spirit of a warrior while helping us to raise awareness for all who suffer from RSD!! Crazy socks are great conversation starters and when someone comments on yours, you can say, “it’s for Melanie and RSD.”
Have faith people … If a 12 year old can do it, so can you!!
Monday, January 2, 2012
Off To A Great Start
Wow … even the final minutes of 2011 were harsh on this skinny, crippled body with it’s insane winds and barometric pressure changes. I had sent out all of my “Happy New Year” texts and was asleep by 10:30. Not very exciting, but very necessary. Surprisingly, when I got up New Year’s Day morning, I did not feel like I’d gone through three rounds with Mohammed Ali in his prime … like I usually do after 80+ mile per hour winds. What a great little turn of events for me!! 2012 is already fantastic!!
That is not to say that I am not fully and completely aware of my pain level, however. All of the stress from the hollerdays has taken up residence in my neck and shoulders and has limited my range of motion and is trying to radiate down my arms … again. But a mani/pedi today and a massage tomorrow are just what my physical therapist (me) ordered. My psychologist (also me) suggested that I do whatever it takes, during this new year, to remain positive and optimistic. A good mood always makes it easier to fight the pain!! My pain management specialist (again, me … until I can find a real doc who listens to me as well as I do) is encouraging me to stay focused on a goal, no matter how small, and to continually set them for myself, both physically and emotionally. My Occupational Therapist-In-Training (yep, you guessed it … me again) has set up a guideline for me to follow that includes sitting my “happy” butt down at the computer to write … and my new boss (guess who!!) has designed a “time clock” system by which I must adhere. I would just like to take this opportunity to thank God for an actual anesthesiologist with a brain and ears and a heart … and 2 steady hands!! (… cuz we all know I couldn’t do his job!!)
This year’s quotes to live by will be … “Whatever it takes” … “Take the bull by the horns” … and … “Faith without works is dead” … so … on that note … HAPPY NEW YEAR Y’ALL!! May this year bring you (and yes, me too) happier days, healthier days, and all of the joys that life does have to offer!!
That is not to say that I am not fully and completely aware of my pain level, however. All of the stress from the hollerdays has taken up residence in my neck and shoulders and has limited my range of motion and is trying to radiate down my arms … again. But a mani/pedi today and a massage tomorrow are just what my physical therapist (me) ordered. My psychologist (also me) suggested that I do whatever it takes, during this new year, to remain positive and optimistic. A good mood always makes it easier to fight the pain!! My pain management specialist (again, me … until I can find a real doc who listens to me as well as I do) is encouraging me to stay focused on a goal, no matter how small, and to continually set them for myself, both physically and emotionally. My Occupational Therapist-In-Training (yep, you guessed it … me again) has set up a guideline for me to follow that includes sitting my “happy” butt down at the computer to write … and my new boss (guess who!!) has designed a “time clock” system by which I must adhere. I would just like to take this opportunity to thank God for an actual anesthesiologist with a brain and ears and a heart … and 2 steady hands!! (… cuz we all know I couldn’t do his job!!)
This year’s quotes to live by will be … “Whatever it takes” … “Take the bull by the horns” … and … “Faith without works is dead” … so … on that note … HAPPY NEW YEAR Y’ALL!! May this year bring you (and yes, me too) happier days, healthier days, and all of the joys that life does have to offer!!
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