I know that I promised you all Part 2 of my detox experience, but life has required that I pause before I begin the next round. It happens. I've gotten used to these life interruptions over the last 22 years of living with RSD. Yes, I'm disappointed, but over time I have adapted to being disappointed and I know what it takes for me to re-center, re-group, and find another way to accomplish what it is that I need to do. I learned the hard way ... alone. And that brings me to this ... I read a blog post this morning that compared practicing an instrument and training for sports to practicing and training for a life with chronic pain. I have not been this moved by another blog since I first read The Spoon Theory. It just made sense to me. It spoke to me in terms that my brain could understand.
When we learn something, anything, there is always a "teacher" involved. Whether we are learning how to read, write, play an instrument, play a sport, cook, tie shoelaces, ride a bike, or drive, there is someone there that taught us how. There is someone that showed us how. There is someone who encouraged us. There is someone who supported us as we failed so that we could learn (and appreciate) how to benefit from our mistakes. The same holds true for learning how to cope and live with a chronic pain condition such as RSD. We need someone (or a few someones) who know what we are facing to show us how to face it. We need someone(s) to inspire us to face it and to give us hope that it'll all be worth it in the end. It is so much easier (and less painful) to learn from someone who has "been there, done that" than it is to learn from someone who has no idea what it feels like (physically, mentally, emotionally, and spiritually) to suffer through the pains that we go through.
I cannot begin to tell you how much I wish I had had an RSD teacher or "coach" in my early years of diagnosis. I wish I had had someone that knew the ungodly pain that I was feeling and who could help me to recognize the ever-morphing symptoms that I was experiencing. I wish I had had someone empathetic, not just sympathetic, to hold my hand and dry my tears during the bad and really bad days. I wish that I had had a teacher/coach who was willing to share their bag of tricks with me so that I wouldn't have had to "fail" and suffer setbacks as much as I did. Yes, I had doctors and physical therapists and psychologists up the wazoo, but none of them suffered from RSD and therefore were unable to empathize with what I was feeling. So even though I had the proper medical care and a wonderfully supportive family, I was left to fend for myself spiritually and emotionally. I had been a tomboy and an athlete, I had practiced how to be tough, but I had absolutely no idea what it meant to fight. My confidence and self-esteem tanked because everything my jockbrain told me to do, my body did enthusiastically ... for a few minutes ... and then it balked and I ended up paying the ultimate price ... for days on end. I began to dwell on the bad stuff ... the pain, the loss of life as I knew it, not being able to participate in anything!! I didn't know about balance or "spoons" ... I only knew that I had to either get back up after falling off of the proverbial horse or stay off of the friggin horse altogether!! I had no idea how detrimental that line of thinking would be to my future. I didn't know, or even think, about preparation time or recovery time. I found myself quitting (and resenting) the things that had I loved doing most before that one fateful day in June of 1991. I didn't know that there were other ways of riding that horse. I was only ingrained with the things that I had practiced before my RSD.
So here I sit 22 years later with a full bag of tricks, overflowing with experience and hope, and a level head on my shoulders. I've learned how to pick my battles, spend spoons wisely, and find other ways of doing things that I loved to do before I got my thumb slammed in that damned refrigerator door. I have learned to accept my RSD diagnosis and I have learned how to live within my meager means. And get this ... I am willing to share with those who are open to the help!! I never want any RSDer to have to forge their own trail the way that I did. I never want any RSDer to feel like they're alone the way that I did. That is why I blog. That is why I advocate. That is why my mission for RSD awareness is paramount in my life. RSD is not biased as to whom it affects. It can happen to anyone at any time. But here's the thing ... you are never ever alone!! I am here, all you need to do is say "hi". I know how difficult it is to ask for help, therefore I am able to recognize the pain when help is being sought without words. <sigh> Yeah, I have faith that I will continue to help those RSDers who seek to better their lives and have the will to fight the numerous battles ahead. And the best way I know how to do that is by example. I won't just tell you what you need to know, I can show you as well.
(Here's the link to the blog that inspired me today. If you get a chance, check it out!! http://www.instituteforchronicpain.org/blog/coping-with-pain-how-people-who-cope-really-well-do-it/ )
Raising Awareness for RSD (and Ziggi's)
The Power of Orange
Tuesday, December 10, 2013
Thursday, November 21, 2013
Round 2, Part 1
Round 1 definitely goes to Toxic Blood. I lost that match and it was 93% my fault. Yes, I am owning this defeat. I'm not proud of it, but I am owning it. Here's the deal, when crossing the chasm between Western and Eastern Medicine, there are just certain things that we, those of us ingrained in Western Philosophies, don't think about. I had completed the Stomach Rescue potion of the detox, and, as instructed, I repeated it after 48 hours. I had consumed all 10 packets of the purified calf thymus. I had taken (and am still taking) the Stomach Enzyme Supplement every time I ate as well as a tablespoon of Cod Liver Oil. I begin every day with a fiber supplement, a thyroid leveler, and a laaaarge mega vitamin. (Anyone who knows my disdain for pills is probably having a hard time accepting that I'm really swallowing these supplements every ... damn ... day. But I am.) As these things all began to work their magic within my system extracting toxins from my blood, I began to break out in an itchy, blistery rash across the back of my shoulders, the back of my neck, and in my non-existent cleavage ... the 1st places on my body to sweat, courtesy of RSD. Fortunately they weren't juicy blisters, but the itching was miserable!! And RSDers know just how miserable it is to itch on an affected body part. We can't scratch it, we can't put ice or a cool cloth on it, we're basically screwed ... so to keep me from causing myself extra pain in those areas, I turned to Cortizone 10+aloe. Aaaaaaand that's where I screwed myself.
I should have called Dr. Lal to ask her what to do, but I did what I always do when faced with a potential increase in RSD pain, I tried to nip it in the bud all by myself. It never dawned on me that the OTC steroid creme would negate every bit of work that I'd done on my gut and blood. Well, almost all of it. My red blood cell count was much better, as were my thyroid levels, but that was it. In my blood I still have large blobs of plaque with yellowish green spots (bile); I still have gall stone particles floating like stars in between the blood cells; my white blood cells are almost completely inactive (thank you steroid creme); I still have brown spots on my blue eyes; and there's a dark, cloudy ring on the outside of my iris, indicating that my endocrine system is clogged.
The 7% that wasn't my fault lies in the fact that this is supposed to be a 3 week process, but due to the doctor moving her office and rescheduling me twice, I was forced to wait 5 weeks. It was at about 3 weeks when I started breaking out in the rash ... but still ... I should have called. So now I must do the blood cleanse all over again, but ... wait for it ... waaaaaait forrrrrr iiiiittt ... I have to allow 5 days to wean my liver off of the steroids and an additional 2 days to allow my compromised system to go back to it's "normal." After I have completed Round 2 (at the 3 week mark this time) I will return to Dr. Lal for 15 minutes of UVBT (Ultra Violet Blood Therapy) which will light up my veins and arteries and serve as a magnet to pull all of the remaining crap in my blood to the walls. I am told that about 2 days after this therapy, as the crap at the walls is working it's way out of the bloodstream, I'm going to get sick, and it won't be pretty. Yes, I began to freak out a little tiny bit at this news, and the more I thought about it and let it fester in my brain, the more freaked out I got. <enter my cousin-in-law, Kimberly, the nutritionist>
Without writing an entire novel about my experiences on Tuesday, I will end Part 1 here. In Part 2 I will introduce you to, and pimp out my cousin and his wife. Meanwhile, if you're in the Denver area and would like to explore non-invasive ways of dealing with secondary diagnoses of RSD, or you're a Normie and just want better health, I am recommending Dr. Noopur Lal in Cherry Creek. She really is fun to work with if you can pry yourself away from the Western Medicine frame of mind. You can check her out at www.drnoopurlal.com ... and if you're local (to me) I have extra business cards that I can give out.
So here I go, weaning, returning to "normal" and starting all over again ... I'ma beat this sumbitch stomach/blood crap ... I have faith that I will. I juuuuuuust need to retrain my brain to get the hell outta the box!!!
I should have called Dr. Lal to ask her what to do, but I did what I always do when faced with a potential increase in RSD pain, I tried to nip it in the bud all by myself. It never dawned on me that the OTC steroid creme would negate every bit of work that I'd done on my gut and blood. Well, almost all of it. My red blood cell count was much better, as were my thyroid levels, but that was it. In my blood I still have large blobs of plaque with yellowish green spots (bile); I still have gall stone particles floating like stars in between the blood cells; my white blood cells are almost completely inactive (thank you steroid creme); I still have brown spots on my blue eyes; and there's a dark, cloudy ring on the outside of my iris, indicating that my endocrine system is clogged.
The 7% that wasn't my fault lies in the fact that this is supposed to be a 3 week process, but due to the doctor moving her office and rescheduling me twice, I was forced to wait 5 weeks. It was at about 3 weeks when I started breaking out in the rash ... but still ... I should have called. So now I must do the blood cleanse all over again, but ... wait for it ... waaaaaait forrrrrr iiiiittt ... I have to allow 5 days to wean my liver off of the steroids and an additional 2 days to allow my compromised system to go back to it's "normal." After I have completed Round 2 (at the 3 week mark this time) I will return to Dr. Lal for 15 minutes of UVBT (Ultra Violet Blood Therapy) which will light up my veins and arteries and serve as a magnet to pull all of the remaining crap in my blood to the walls. I am told that about 2 days after this therapy, as the crap at the walls is working it's way out of the bloodstream, I'm going to get sick, and it won't be pretty. Yes, I began to freak out a little tiny bit at this news, and the more I thought about it and let it fester in my brain, the more freaked out I got. <enter my cousin-in-law, Kimberly, the nutritionist>
Without writing an entire novel about my experiences on Tuesday, I will end Part 1 here. In Part 2 I will introduce you to, and pimp out my cousin and his wife. Meanwhile, if you're in the Denver area and would like to explore non-invasive ways of dealing with secondary diagnoses of RSD, or you're a Normie and just want better health, I am recommending Dr. Noopur Lal in Cherry Creek. She really is fun to work with if you can pry yourself away from the Western Medicine frame of mind. You can check her out at www.drnoopurlal.com ... and if you're local (to me) I have extra business cards that I can give out.
So here I go, weaning, returning to "normal" and starting all over again ... I'ma beat this sumbitch stomach/blood crap ... I have faith that I will. I juuuuuuust need to retrain my brain to get the hell outta the box!!!
Tuesday, November 5, 2013
Be Blessed ... Like Me!!
RSDers around the world get frustrated easily. We have this "rare" condition/disorder/illness for which there is no cure. For most of us it's usually "invisible." We are rarely believed by our family and friends and a huge chunk of the medical community still hasn't even heard of it. We are called addicts, pill seekers, hypochondriacs, liars, and drama queens/kings. We do everything in our power to make our voices heard, and still we are met with resistance.
To the namecallers, doubters, disbelievers, ignorers, and know-it-all-assholes I say this ... Fuck You!! (sorry Mom ... kinda but not really.) We, RSD sufferers, have an Awareness Month, an International Awareness Day, an Awareness Ribbon color, and the doctor bills to prove that our disorder exists!! And to my family and friends that believed me from the start, stuck with me thru thick and thin, and never lost faith in me even when I'd lost faith in myself, I say this ... I Love You!! To the moon and back, for ever and ever, and from the bottom of my heart!! My Mom, my Dad, the Bombshell (my sister), and Houdini (my brother) have never ever doubted my pain. I truly am one of the lucky ones!!
Today is Nervember 5, RSD Awareness Day!! All I can say is ... WOW!! I made 2 posts on Facebook last night asking my friends and family to wear orange today to help me, and a couple million other RSDers, raise awareness. Wanna know how many of my FB/Normie friends had not heard of RSD until they met me?? Approximately 98% of them!! Wanna know how many are UNaware now?? NONE!! Wanna know how many of them have posted pics of themselves wearing orange today?? 97 and counting!! I feel blessed!! There is no other word that accurately describes how I feel. Emtionally, spiritually, mentally, and physically ... I feel blessed.
Yep, you read that right!! Physically I feel blessed too!! Every RSDer has asked the universe, "Why me?" Well ... I know "why me"!! I was given RSD so that I could help bring it into the spotlight of human consciousness. Just like the world knows about cancer, the world will know about RSD. Now ... Wanna know how I know that I have done just that?? A couple days ago, a friend of mine from high school, who is now an ICU and Cardiac nurse in New Mexico, posted this on my FB wall ... "Jen, I just wanted to tell you that you are helping me be a better nurse and helping others as well. We recently had a young woman in the ICU with lupus and the staff did not understand the pain involved. I have taken this opportunity to teach them about the pain involved with Lupus and RSD. I have even started to teach them about spoons. You are such a strong woman and are a blessing to those around you. Love you." My suffering is paving the way for others!! The medical community is listening to me!! This sqeaky wheel is gettin' herself some grease, dammit!! I ... am ... making ... a ... difference!!! I have been blessed with the monster, RSD!!
Keep wearing orange!! Keep educating yourselves and others about the existance and horrors of RSD!! Keep hangin' tough!! My faith has been restored time and time again!! RSDers, don't give up!! Between the moments of varied excruciating maladies, feel blessed!! You are still here to tell your tale. You have someone who will listen and believe (me). Your story might just give someone else the hope and faith that they need to get thru their bad days!! YOU can change the world!!
FURSD!!!
To the namecallers, doubters, disbelievers, ignorers, and know-it-all-assholes I say this ... Fuck You!! (sorry Mom ... kinda but not really.) We, RSD sufferers, have an Awareness Month, an International Awareness Day, an Awareness Ribbon color, and the doctor bills to prove that our disorder exists!! And to my family and friends that believed me from the start, stuck with me thru thick and thin, and never lost faith in me even when I'd lost faith in myself, I say this ... I Love You!! To the moon and back, for ever and ever, and from the bottom of my heart!! My Mom, my Dad, the Bombshell (my sister), and Houdini (my brother) have never ever doubted my pain. I truly am one of the lucky ones!!
Today is Nervember 5, RSD Awareness Day!! All I can say is ... WOW!! I made 2 posts on Facebook last night asking my friends and family to wear orange today to help me, and a couple million other RSDers, raise awareness. Wanna know how many of my FB/Normie friends had not heard of RSD until they met me?? Approximately 98% of them!! Wanna know how many are UNaware now?? NONE!! Wanna know how many of them have posted pics of themselves wearing orange today?? 97 and counting!! I feel blessed!! There is no other word that accurately describes how I feel. Emtionally, spiritually, mentally, and physically ... I feel blessed.
Yep, you read that right!! Physically I feel blessed too!! Every RSDer has asked the universe, "Why me?" Well ... I know "why me"!! I was given RSD so that I could help bring it into the spotlight of human consciousness. Just like the world knows about cancer, the world will know about RSD. Now ... Wanna know how I know that I have done just that?? A couple days ago, a friend of mine from high school, who is now an ICU and Cardiac nurse in New Mexico, posted this on my FB wall ... "Jen, I just wanted to tell you that you are helping me be a better nurse and helping others as well. We recently had a young woman in the ICU with lupus and the staff did not understand the pain involved. I have taken this opportunity to teach them about the pain involved with Lupus and RSD. I have even started to teach them about spoons. You are such a strong woman and are a blessing to those around you. Love you." My suffering is paving the way for others!! The medical community is listening to me!! This sqeaky wheel is gettin' herself some grease, dammit!! I ... am ... making ... a ... difference!!! I have been blessed with the monster, RSD!!
Keep wearing orange!! Keep educating yourselves and others about the existance and horrors of RSD!! Keep hangin' tough!! My faith has been restored time and time again!! RSDers, don't give up!! Between the moments of varied excruciating maladies, feel blessed!! You are still here to tell your tale. You have someone who will listen and believe (me). Your story might just give someone else the hope and faith that they need to get thru their bad days!! YOU can change the world!!
FURSD!!!
Tuesday, October 29, 2013
Finding Happiness in Hugs
You will never hear me complain about the amplified pain that is brought on by hugs. Never!! I may get snarky about them in a humous way, but I will not complain!! I had such a great time this last weekend with some absolutely amazing Bronco Nuts!! I will willingly pay, for as long as it takes, for these zapping skin flares and vibrating tuning forks that I call "bones" to subside. On Saturday, and with my fave sidekicks, ColoAngel and Fave Hubs, we journeyed to Denver for Nut Summit 2013 and I wasn't anxious about the pain that I knew would come because I was with them. 2 years ago the only thing that we, The Nuts, knew that we had in common was our love for the Denver Broncos, and now we're as close as we can get without being biologically related. Boy howdy did I get hugged that night ... and I loved every minute of it!! I got hugs from all over Colorado, Washington state, a double whammy from NY, and I got a Bear hug from Wyoming!! I finally got to comiserate with the Princess, harass the Fader, and not feel like a giant among the women. With Houdini as our batender, there was way too much fun to be had by all!! My only regret was not being able to go to the Broncos/Redskins game the next day. Hey, I'm a Spoonie and I can't do it all. I don't have to like it, but I do have to accept it.
I knew that I'd need a distraction this week so I had shows and movies lined up and food cooked and frozen for later consumption. I thought I had escaped the worst of the blood detox so I only prepared for the RSD pain ... I was wrong and I am screwd ... momentarily. These last 2 days I have gone through most of my stash of post-treatment-puke-bags and I can only wear sweats that have elastic around the waist because I'm so weak that I'm just not quick enough to get to the bathroom and get my sweats untied in time. This truly sux!! Only 1 more week ... 1 more week ... holy crap I hafta make it 1 more week. I have absolutely no clue where I'm going to get the strength and spoons to survive 1 more week. I'm pooped!! (literally) ... I'm exhausted ... I'm in pain ... I'm nauseous ... I can't stay asleep for more than 2 hours ... I haven't showered since before the Nut Summit on Saturday because I'm afraid of how the water will feel ... I'm a w-r-e-c-k, wreck!!
But I'm still blessed and happy!! I have wonderful memories of wonderful people, my best friend keeps making me giggle, my dog won't leave my side, and my folks have returned from KS so now I don't have to go to the store for more toilet paper and ginger ale. I can get thru anything RSD throws at me as long as have my dog and my people and faith!!!!!
And now I shall resume my position in the big, brown, comfy chair with Kiva draped around my shoulders like a boa and await delivery from My Mom!!!
I knew that I'd need a distraction this week so I had shows and movies lined up and food cooked and frozen for later consumption. I thought I had escaped the worst of the blood detox so I only prepared for the RSD pain ... I was wrong and I am screwd ... momentarily. These last 2 days I have gone through most of my stash of post-treatment-puke-bags and I can only wear sweats that have elastic around the waist because I'm so weak that I'm just not quick enough to get to the bathroom and get my sweats untied in time. This truly sux!! Only 1 more week ... 1 more week ... holy crap I hafta make it 1 more week. I have absolutely no clue where I'm going to get the strength and spoons to survive 1 more week. I'm pooped!! (literally) ... I'm exhausted ... I'm in pain ... I'm nauseous ... I can't stay asleep for more than 2 hours ... I haven't showered since before the Nut Summit on Saturday because I'm afraid of how the water will feel ... I'm a w-r-e-c-k, wreck!!
But I'm still blessed and happy!! I have wonderful memories of wonderful people, my best friend keeps making me giggle, my dog won't leave my side, and my folks have returned from KS so now I don't have to go to the store for more toilet paper and ginger ale. I can get thru anything RSD throws at me as long as have my dog and my people and faith!!!!!
And now I shall resume my position in the big, brown, comfy chair with Kiva draped around my shoulders like a boa and await delivery from My Mom!!!
Tuesday, October 15, 2013
General Jenn vs Toxic Blood
Soooo ... Maybe things are a little worse than I've been letting on recently. Yes, I'm down to 115lbs; yes, I throw more nausea pills down my gullet daily than I do pots of coffee; yes, I'm not remotely comfortable unless I have a heating pad draped across my belly and set to Medium-High; yes, every time I eat, no matter how much I eat, my whole torso is in agonizing pain for hours afterward; yes, my multiple mini burps have turned into ripping belches that leave all Booger fans awestruck; and yes, all of this added ick has made my RSD pain somewhat worse. When my regular doc recommended that I go see a Gasteroenterologist, I freaked out. That is the one specialty that scares me beyond belief. Luckily I am biologically related to an MD who is "...a master classical homeopath as well as a cutting edge integrative and anti-aging doctor. Equally at home with Chinese medicine theory as well as modern bio-identical hormone therapy..." or so says his website. To me, he's just my brilliant 1st cousin, The MD, and he suggested that I go see a friend of his in Denver that could help me get to the root of the problem to irradicate it instead of just treating the individual symptoms.
Well ... I took my first real dip in the Eastern Medicine pool today and I can honestly say that I am both releived and terrified. I am releived that My Mom went with me and we both already adore this doctor. She explained things to us in ways that we could understand and she and I have the same warped sense of humor. There was nothing about her presense, words, or mannerisms that made me (or My Mom) feel uneasy or made either of us question her motives. The woman even told me, in her cute Indian accented voice, that she would hold my hand through this whole ordeal. Are you kidding me? What doctor does that? The terrifying part is knkowing that I've already detoxed off of alcohol, pain killers, and valium, and that SUCKED!!! I had fully planned on never reliving those 1st 90 days ever ever again!! But ... her plan definitely beats the alternative!!!
She pricked the pinky finger of my left hand and made 2 blots on one slide and 1 blot on another. The 1st one was to test my blood type ... I'm an O. The 2nd one she put under a microscope and recorded my "active" blood onto a dvd that she played for us. My white blood cells do not look like octopii, I'm told this is a bad thing. The deposits of plaque in my blood have yellow and green spots on them signifying that bile is seeping into my bloodstream instead of getting flushed out. Since I had my gall bladder removed in 1999, my body has continued to make gall stones. Since there is no organ to hold them all anymore, billions of them float freely (in particle form) through my veins and ateries. My white blood cells were not attacking and devouring the plaque. I was only showing 1-2 nuclei per cell as opposed to the 4-5 nuclei of a healthy person. Add to that the disruption of blood flow caused by RSD and you get the grand total of ... <dun dun nuh> Toxic Blood ... but here's the thing ... Eastern Medicine doesn't get all wrapped up in the name of the diagnosis, she just explained it to me as "toxic blood." (It was such a releif to not hear the term GastroParesis!!) So now I have to detox my blood using herbs, supplements, oils (ew castor oil), and specific enzymes for my blood type. She told me that wasn't going to sugar coat what was about to happen to me. "You'll think you're dying." She told me what happened to her when she did a similar detox (her blood type is A and she is a cancer survivor) and she told me that she ran she ran a temp of 103*-104* for almost a week. <insert my panicked face here> And then she told me that soon as her fever broke, she felt physically stronger than she had in years. She is now 3 years passed her Western Medicine Expiration Date and that woman has earned my trust as well as my respect!!
So now I detoxify my blood and I focus on rebuilding healthy cells for the next 3 weeks. I have to get my body to excrete bile like it's supposed to and not the way to which it's become accustomed. I get to up the amount of Epsom salt baths I take every week, and I get to have faith. My flair for fighting the good fights and bad flares, my strong support system, the 2 new additions to my medical dream team, a positive attitude, and the sheer deisre to appropriately fill out a pair of jeans again without the added padding of fleece lined leggings underneath are what's going to keep me moving forward in this battle with my head held high. Fighting on........
Well ... I took my first real dip in the Eastern Medicine pool today and I can honestly say that I am both releived and terrified. I am releived that My Mom went with me and we both already adore this doctor. She explained things to us in ways that we could understand and she and I have the same warped sense of humor. There was nothing about her presense, words, or mannerisms that made me (or My Mom) feel uneasy or made either of us question her motives. The woman even told me, in her cute Indian accented voice, that she would hold my hand through this whole ordeal. Are you kidding me? What doctor does that? The terrifying part is knkowing that I've already detoxed off of alcohol, pain killers, and valium, and that SUCKED!!! I had fully planned on never reliving those 1st 90 days ever ever again!! But ... her plan definitely beats the alternative!!!
She pricked the pinky finger of my left hand and made 2 blots on one slide and 1 blot on another. The 1st one was to test my blood type ... I'm an O. The 2nd one she put under a microscope and recorded my "active" blood onto a dvd that she played for us. My white blood cells do not look like octopii, I'm told this is a bad thing. The deposits of plaque in my blood have yellow and green spots on them signifying that bile is seeping into my bloodstream instead of getting flushed out. Since I had my gall bladder removed in 1999, my body has continued to make gall stones. Since there is no organ to hold them all anymore, billions of them float freely (in particle form) through my veins and ateries. My white blood cells were not attacking and devouring the plaque. I was only showing 1-2 nuclei per cell as opposed to the 4-5 nuclei of a healthy person. Add to that the disruption of blood flow caused by RSD and you get the grand total of ... <dun dun nuh> Toxic Blood ... but here's the thing ... Eastern Medicine doesn't get all wrapped up in the name of the diagnosis, she just explained it to me as "toxic blood." (It was such a releif to not hear the term GastroParesis!!) So now I have to detox my blood using herbs, supplements, oils (ew castor oil), and specific enzymes for my blood type. She told me that wasn't going to sugar coat what was about to happen to me. "You'll think you're dying." She told me what happened to her when she did a similar detox (her blood type is A and she is a cancer survivor) and she told me that she ran she ran a temp of 103*-104* for almost a week. <insert my panicked face here> And then she told me that soon as her fever broke, she felt physically stronger than she had in years. She is now 3 years passed her Western Medicine Expiration Date and that woman has earned my trust as well as my respect!!
So now I detoxify my blood and I focus on rebuilding healthy cells for the next 3 weeks. I have to get my body to excrete bile like it's supposed to and not the way to which it's become accustomed. I get to up the amount of Epsom salt baths I take every week, and I get to have faith. My flair for fighting the good fights and bad flares, my strong support system, the 2 new additions to my medical dream team, a positive attitude, and the sheer deisre to appropriately fill out a pair of jeans again without the added padding of fleece lined leggings underneath are what's going to keep me moving forward in this battle with my head held high. Fighting on........
Friday, September 27, 2013
Tougher Than Patton, I Am
How do you cope with the anger, depression, fear, and tears associated with new or reoccurring health issues? Do you give into the anger and let it fuel your depression or do you weigh your options right away and develop a plan of attack? Do you let the fear paralyze you or do you fight against it with every fiber of your being? Do your uncontrollable sobs incite uncontrollable flares or are you able to dry your own eyes in order to avoid the amplified pain? Have you paid enough attention to your own personal signs to recognize when the vicious cycle is going to hit you again or do you lie, deny, and act surprised each and every time it happens? Do you bitch, moan, and complain to everybody that comes within earshot, drawing them into your drama or do you hold your tongue and only confide all of your uneasinesses to a small handful of trusted friends or family members? Do you make a conscious decision to continue fighting or do you threaten yourself with giving up? But most importantly ... Do you have a game plan for the next time it happens or are you just going to sit on the sidelines of your own life and continue to ask the universe, "Why me?"
Here's what recently happened to me and here's the game plan that I had already implemented for myself. (My game plan has been 22 years in the making and it's still not perfect, but since I'm still alive to tell the tale and pass along what I know about how I got to this place in my life, I'll take that 100% success rate!!) Yesterday afternoon, after a trip to my primary care doc, I was given some expected, yet disturbing news. I was emotionally numb as I aimlessly walked out of his office. All I can say is "thank God for my support system"!!! (I have a mental list of the few people I feel comfortable enough to confide in 1st, 2nd, 3rd, etc, when I'm faced with adversity that is in direct relation to my RSD. When I have non-RSD issues, I have a different list even though it contains the same names. It's all about the order!!) The 2 doosies that were delivered to me yesterday were 1.) chronic bronchitis and 2.) my stomach issues have caused me to lose an alarming amount of weight .
1.) I knew that I had bronchitis, I felt it on Sunday. It happens every time I go in for treatment (which happened to be last Friday). My non-existent immune system (courtesy of RSD) cannot fight off these kinds of infections. This is how it's been for the last 22 years. It's only been the last 3-4 years that I've had a game plan to keep it from returning to the old norm of pneumonia. I knew that bronchitis was inevitable so I had my anesthesiologist prescribe an antibiotic and an inhaler for me the week before treatment. I also upped my vitamin C intake to 4000 mg per day, like any knowledgeable RSDer would do before going into any kind of surgical procedure. I started taking echinacea tabs, shots of this nasty, immune booster crap called Sambucus (made by Nature's Way), and I had a call in to my regular doc before 10a.m. Sunday morning. Right away he called in all of my chest meds and set me up with an appt on Thursday (yesterday).
2.) Now, anyone that knows me or that has seen a recent picture of me, knows that my bony 5'11" frame was already supporting minimal poundage, but to see the concerned look on the nurse's face when she called me back coupled with the appalling numbers on the scale put a whole new perspective on what I'm facing. I wasn't in shock, I knew it was going to be bad news. The Body Mass Index says that a woman my height should weigh about 155 lbs. For the better part of 21 years I have managed to keep my weight between 130 and 135. Yesterday I tipped the scales at an uber-svelte 115. Just another reason for me to hate the accuracy of math. After trial and error with the local gastroenterology specialists about 5 years back, I will be looking outside of my little hamlet for a GI doc that is versed in RSD instead of ignorant about it. Here's the deal ... I eat!! And I have been known to eat mass quantities in one sitting!! Oh yeah, I have references!! But I have to not be nauseous in order to do it. I have tried different kinds of smoothies and protein shakes to supplement my diet, but again, I have to not be nauseous in order to drink them. And when the sporadic times of no nausea do occur, you can bet your bippie that I'm going to put real food in my stomach, not just a smoothie or shake. I've always been a whole-milk/meat-and-potatoes kind of gal anyway. No amount of almond milk and whey proteins are gonna fill that void!! Anyway, I came home yesterday, dried my own eyes after visiting with my Mom, my brother, my sister and my bff, and picked up the phone to try to make the dreaded GI appt.
I have faith that this bronchitis will not stick around for more than a week because I was proactive and kept it from turning into something worse. I have faith that I will find a GI doc who has heard of RSD and actually practices the oath of "to do no harm." I have faith that whatever the diagnosis ends up being, I will find a way to fight it and beat it. I've fought bigger battles than this in my life and won. I'll win this one too!! All I really need, as far as a support system goes, I have. My parents, my siblings, my bff, and my fellow CSDfM warriors give me all the emotional support that I need in order to continue fighting. My dog, Kiva, doesn't allow my tears to reach my chin, so in order to avoid a face full of slobber, I have a pretty good hold on my tears ... aaaaaaand I really don't mind that face full of slobber when the tears do flow. I have to stay positive!! Any negative or hurtful thoughts will only make things worse, and I'm not willing to let worse win!! Battle aren't easy, they aren't fun, and there are no quick fixes. Until there is a cure for RSD, I know that my pain will never be a "0" on the pain scale. Until there's a cure for RSD, I know that my immune system is severely compromised. Until there's a cure for RSD, I will continue my role as General Jenn in the war for RSD Awareness ... aaaaand probably afterwards too ... that's just the kinda war horse I really am!! Meanwhile ... I still have coffee!!
Here's what recently happened to me and here's the game plan that I had already implemented for myself. (My game plan has been 22 years in the making and it's still not perfect, but since I'm still alive to tell the tale and pass along what I know about how I got to this place in my life, I'll take that 100% success rate!!) Yesterday afternoon, after a trip to my primary care doc, I was given some expected, yet disturbing news. I was emotionally numb as I aimlessly walked out of his office. All I can say is "thank God for my support system"!!! (I have a mental list of the few people I feel comfortable enough to confide in 1st, 2nd, 3rd, etc, when I'm faced with adversity that is in direct relation to my RSD. When I have non-RSD issues, I have a different list even though it contains the same names. It's all about the order!!) The 2 doosies that were delivered to me yesterday were 1.) chronic bronchitis and 2.) my stomach issues have caused me to lose an alarming amount of weight .
1.) I knew that I had bronchitis, I felt it on Sunday. It happens every time I go in for treatment (which happened to be last Friday). My non-existent immune system (courtesy of RSD) cannot fight off these kinds of infections. This is how it's been for the last 22 years. It's only been the last 3-4 years that I've had a game plan to keep it from returning to the old norm of pneumonia. I knew that bronchitis was inevitable so I had my anesthesiologist prescribe an antibiotic and an inhaler for me the week before treatment. I also upped my vitamin C intake to 4000 mg per day, like any knowledgeable RSDer would do before going into any kind of surgical procedure. I started taking echinacea tabs, shots of this nasty, immune booster crap called Sambucus (made by Nature's Way), and I had a call in to my regular doc before 10a.m. Sunday morning. Right away he called in all of my chest meds and set me up with an appt on Thursday (yesterday).
2.) Now, anyone that knows me or that has seen a recent picture of me, knows that my bony 5'11" frame was already supporting minimal poundage, but to see the concerned look on the nurse's face when she called me back coupled with the appalling numbers on the scale put a whole new perspective on what I'm facing. I wasn't in shock, I knew it was going to be bad news. The Body Mass Index says that a woman my height should weigh about 155 lbs. For the better part of 21 years I have managed to keep my weight between 130 and 135. Yesterday I tipped the scales at an uber-svelte 115. Just another reason for me to hate the accuracy of math. After trial and error with the local gastroenterology specialists about 5 years back, I will be looking outside of my little hamlet for a GI doc that is versed in RSD instead of ignorant about it. Here's the deal ... I eat!! And I have been known to eat mass quantities in one sitting!! Oh yeah, I have references!! But I have to not be nauseous in order to do it. I have tried different kinds of smoothies and protein shakes to supplement my diet, but again, I have to not be nauseous in order to drink them. And when the sporadic times of no nausea do occur, you can bet your bippie that I'm going to put real food in my stomach, not just a smoothie or shake. I've always been a whole-milk/meat-and-potatoes kind of gal anyway. No amount of almond milk and whey proteins are gonna fill that void!! Anyway, I came home yesterday, dried my own eyes after visiting with my Mom, my brother, my sister and my bff, and picked up the phone to try to make the dreaded GI appt.
I have faith that this bronchitis will not stick around for more than a week because I was proactive and kept it from turning into something worse. I have faith that I will find a GI doc who has heard of RSD and actually practices the oath of "to do no harm." I have faith that whatever the diagnosis ends up being, I will find a way to fight it and beat it. I've fought bigger battles than this in my life and won. I'll win this one too!! All I really need, as far as a support system goes, I have. My parents, my siblings, my bff, and my fellow CSDfM warriors give me all the emotional support that I need in order to continue fighting. My dog, Kiva, doesn't allow my tears to reach my chin, so in order to avoid a face full of slobber, I have a pretty good hold on my tears ... aaaaaaand I really don't mind that face full of slobber when the tears do flow. I have to stay positive!! Any negative or hurtful thoughts will only make things worse, and I'm not willing to let worse win!! Battle aren't easy, they aren't fun, and there are no quick fixes. Until there is a cure for RSD, I know that my pain will never be a "0" on the pain scale. Until there's a cure for RSD, I know that my immune system is severely compromised. Until there's a cure for RSD, I will continue my role as General Jenn in the war for RSD Awareness ... aaaaand probably afterwards too ... that's just the kinda war horse I really am!! Meanwhile ... I still have coffee!!
Friday, September 20, 2013
Putting Myself On Injured Reserve List
If you've been watching the news anywhere in the whole wide world for the last 8-9 days, then you have heard about my little hamlet, Longmont, Colorado, being tied together with the phrases "storm of Biblical proportions" ... "the 1000 year flood" ... "not since Hurricane Katrina..." ... and "FEMA." And this little RSDer kept her cool long enough to: direct her mother and brother through flooded streets and torrential downpours so that they could get home; helped a few other stranded motorist/facebookers find their way around the nasty, roaring mess; agreed to be the one who kept all family and friends apprised of the situation "back home" via FB; delivered food to 1st Responders, Boulder County cops, and both branches of the National Guard that came running in when we needed bailing out; baked cookies and loaves of bread for the people who were allowed back in to Lyons, CO to begin rebuilding their homes and businesses; aaaaand then I crumbled. The insane weather changes for over a week, the stress of knowing people who were caught out in the storm, and the abuse that I put my body through so that I could continue relaying info and messages have sent me screaming for my biannual Ketamine treatment a month early. When I called my doc on Monday I had to have him paged. Since he lives in this town too, he was affected as well and had taken time off. When I asked him if he was aware that we had gotten a little bit of weather, he busted out laughing and said, "How about Friday at 3?"
It is now 1:30 on Friday and my stomach is in my throat!! My anxieties always go up on treatment days due my utter disdain for massive doses of Ketamine. It does wonderful things for my nerves and my pain, but it causes my stomach and my head to join together in an uprising ... literally. I lose all control over my limbs and have to be carried everywhere ... including to the bathroom. My ass is always numb from the epidurals and I always ... always manage to fall of the toilet and conk my head on either the wall of the sink. I can only hope and pray that this treatment will be just like the one I had this last April. I was walking on my own and able to take care of myself again after only 2 days. Unfortunately, I never have the same response twice ... but I can still hope and pray!!
I have assembled my Dream Team of Caregivers and they take the field in a few hours as well. If you pray, they'll need all the extra help that they can get!! I am usually a Day Surgery resident for about 4 hours total, but that's just an average. After 22 years you'd think we'd have it nailed down better than that, but treatments continue to change, as does my reaction to them, so each time is just like my first time ... minus the prep work. I could almost start my own IV after all of the hours I've put in at that place.
I have faith that life will go on around me for next week or so. As my city continues to dig out, clean up, and rebuild, I will take my backseat position and take care of myself now that the brunt of it is over. I'll pick up my volunteer status again after I've given myself the time I need to get back on track. I really want be out there doing something to help!!! But the best way I can help right now is to take care of myself so that I can pitch in where I'm needed later. WE ARE ... ColoradoStrong!!!
It is now 1:30 on Friday and my stomach is in my throat!! My anxieties always go up on treatment days due my utter disdain for massive doses of Ketamine. It does wonderful things for my nerves and my pain, but it causes my stomach and my head to join together in an uprising ... literally. I lose all control over my limbs and have to be carried everywhere ... including to the bathroom. My ass is always numb from the epidurals and I always ... always manage to fall of the toilet and conk my head on either the wall of the sink. I can only hope and pray that this treatment will be just like the one I had this last April. I was walking on my own and able to take care of myself again after only 2 days. Unfortunately, I never have the same response twice ... but I can still hope and pray!!
I have assembled my Dream Team of Caregivers and they take the field in a few hours as well. If you pray, they'll need all the extra help that they can get!! I am usually a Day Surgery resident for about 4 hours total, but that's just an average. After 22 years you'd think we'd have it nailed down better than that, but treatments continue to change, as does my reaction to them, so each time is just like my first time ... minus the prep work. I could almost start my own IV after all of the hours I've put in at that place.
I have faith that life will go on around me for next week or so. As my city continues to dig out, clean up, and rebuild, I will take my backseat position and take care of myself now that the brunt of it is over. I'll pick up my volunteer status again after I've given myself the time I need to get back on track. I really want be out there doing something to help!!! But the best way I can help right now is to take care of myself so that I can pitch in where I'm needed later. WE ARE ... ColoradoStrong!!!
Wednesday, September 11, 2013
...and then it was "fall."
For the last few days the temperature has not been above 70* here in my little corner of northern Colorado and it's not looking to change much until, maybe, the weekend. Even though it's not officially fall for another 2-ish weeks, these cooler days (and nights) have already taken a toll on my body. My my daytime and nighttime Ketamine nasal spray dosages have been upped from 2% and 4% to 3% and 5%. But it's not officially fall yet!! My pain levels are high enough that I've begun contemplating getting my biannual treatment a month early. But it's not officially fall yet!! My cane now accompanies me on all outings, even to my back yard garden and to take out the trash. But it's not officially fall yet!! The fleece sweats. fleece leggings, pure silk long sleeved t-shirts, and fuzzy warm cardigans have already made their seasonal debut and some of them are now awaiting their turn in the washing machine. But it's not officially fall yet!! The ultra soft fleece blankets are now out of their summer storage cupboard and are strategically placed along the back of the couch as well as draped over the back and both arms of my big, brown, comfy chair. But it's not officially fall yet!! My heated mattress pad thingy has been plugged in, turned on, and turned up. But it's not officially fall yet!! Kiva and I have already had our first fight over the electric throw blanket. But it's not officially fall yet!! I am not finished with summer!! I still have summer stuff to do!! I am not ready to feel the amplified physical pain that has soared through my nerves for the last 22 falls. I ... am physically ... not ready ... for fall.
BUT ...there is the non-physical flip side to the fall coin ... My Aloha Vanilla candle that has resided on my candle warmer since late April has been replaced by my Autumn candle. And it's not even fall yet!! The smells of comfort food have already begun wafting through my house. And it's not even fall yet!! Professional, collegiate, and high school football teams have already taken the field (and all of my teams have more wins than losses so far). And it's not even fall yet!! All of my canning supplies are out of their storage compartment and patiently awaiting the remaining garden veggies to ripen. And it's not even fall yet!! I have begun collecting Halloween recipes and augmenting my Halloween decoration boxes. And it's not even fall yet!! But none of these things lessen the physical pain that fall's drastic atmospheric changes bring into my world.
My body needs warmth, my psyche needs natural Vitamin D. My skin hates clothes, my depression feeds on gray skies and rain. I want to still go places and do stuff, I am not ready to be confined to my bubble!! I want for people who love this weather to respect the feelings of those of us who don't. If Normies, when professing their love for fall, would just say something like, "I am really loving this weather, but my heart goes out to those whose lives it negatively affects," I wouldn't have to ban myself from public places so early in the season ... and I know for a fact that I am not the only RSDer or Chronic Pain sufferer who feels this way!! I read posts and hear comments about humanity being more compassionate and understanding of illnesses and disabilities. There are anti-bullying campaigns everywhere I look ... and yet I feel discriminated against and bullied every time someone comments about how great fall is and how it's their favorite season and how much they love the cooler temperatures. Well here's the deal ... Summer is my favorite season because it allows me to be mobile and happy and warm without constricting clothing. The days are longer and I am able to do more stuff more often. The quiet and lonely nights, when my whole body throbs with every beat of my heart, are shorter. Summer makes my life manageable. However, I am able to empathize with those who do not like summer or the summer heat for whatever reason. When I'm in public during the summer and I see someone who is having a hard time breathing or sweating profusely, I am conscious of any of my words that they may overhear. For instance, you won't hear me comment on a restaurant patio about how good the sun feels when a woman at the next table is sweating buckets. Why can't more people be conscious of their words like that too?? Yesterday, as I was waiting at a doctor's office, dressed in jeans, a sweatshirt, and a jacket and leaning on my cane because I was too afraid of the pain to sit down and get back up, another woman in the waiting room commented to her male counterpart about how blessed "we all" are for the cooler weather. I um ... well ... you see ... I uh ... hmmmm ... I kinda snapped. I apologized to her for snapping, but yeah, I still snapped. And all I said were 5 little words ... "Please don't speak for me." To me, she had just insulted me right to my face. She might as well have said, "All Coloradans love this weather so much!!! Screw those of you who are in agonizing pain because of it!!! Yippeeeeeeeeee!!!!" Ok, so maybe I'm just being oversensitive about the whole thing, but you would be too if you were fighting, tooth and nail, to keep the brutal pain spikes, spasms, and flares at bay for as long as possible ... wouldn't you??
I have faith that humanity will not change overnight ... sad but true fact. I have faith that I will continue to lead by example when it comes to empathizing with the plights of others. I have faith that, if I can just teach 1 Normie how to practice compassion, my annual fall-pain-fest will not be in vain. Normies, call or text your favorite cripple when your local weather starts to change and just let them know you're thinking of them. Stop by and visit them when you know that they aren't able to get out of the house. Ask if there's anything you could help with while you're there ... wash dishes, fold a load of laundry, make a pot of coffee, run a vacuum, something to let them know that you understand how difficult life can be for those with painful diseases and disorders. Or better yet, if you see something that needs to be done, just do it, don't ask. Most of us won't know how to respond when you're in our presence and ask if you can help us, but showing us that you're compassionate and that you care is, sometimes, all the motivation we need to keep plugging along during our darker hours.
OH!!! This is also a fabulous way to show your support for Pain Awareness Month (Sept.), and in case you didn't know, we are smack dab in the middle of Invisible Illness Week!! Mark your calendars ... November is coming (RSD Awareness Month), as is January 24, 2014 ... The 4th Annual Crazy Sock Day for Melanie!! (yeah yeah yeah ... I still have stuff that I can look forward to doing even during the crappy months!!)
BUT ...there is the non-physical flip side to the fall coin ... My Aloha Vanilla candle that has resided on my candle warmer since late April has been replaced by my Autumn candle. And it's not even fall yet!! The smells of comfort food have already begun wafting through my house. And it's not even fall yet!! Professional, collegiate, and high school football teams have already taken the field (and all of my teams have more wins than losses so far). And it's not even fall yet!! All of my canning supplies are out of their storage compartment and patiently awaiting the remaining garden veggies to ripen. And it's not even fall yet!! I have begun collecting Halloween recipes and augmenting my Halloween decoration boxes. And it's not even fall yet!! But none of these things lessen the physical pain that fall's drastic atmospheric changes bring into my world.
My body needs warmth, my psyche needs natural Vitamin D. My skin hates clothes, my depression feeds on gray skies and rain. I want to still go places and do stuff, I am not ready to be confined to my bubble!! I want for people who love this weather to respect the feelings of those of us who don't. If Normies, when professing their love for fall, would just say something like, "I am really loving this weather, but my heart goes out to those whose lives it negatively affects," I wouldn't have to ban myself from public places so early in the season ... and I know for a fact that I am not the only RSDer or Chronic Pain sufferer who feels this way!! I read posts and hear comments about humanity being more compassionate and understanding of illnesses and disabilities. There are anti-bullying campaigns everywhere I look ... and yet I feel discriminated against and bullied every time someone comments about how great fall is and how it's their favorite season and how much they love the cooler temperatures. Well here's the deal ... Summer is my favorite season because it allows me to be mobile and happy and warm without constricting clothing. The days are longer and I am able to do more stuff more often. The quiet and lonely nights, when my whole body throbs with every beat of my heart, are shorter. Summer makes my life manageable. However, I am able to empathize with those who do not like summer or the summer heat for whatever reason. When I'm in public during the summer and I see someone who is having a hard time breathing or sweating profusely, I am conscious of any of my words that they may overhear. For instance, you won't hear me comment on a restaurant patio about how good the sun feels when a woman at the next table is sweating buckets. Why can't more people be conscious of their words like that too?? Yesterday, as I was waiting at a doctor's office, dressed in jeans, a sweatshirt, and a jacket and leaning on my cane because I was too afraid of the pain to sit down and get back up, another woman in the waiting room commented to her male counterpart about how blessed "we all" are for the cooler weather. I um ... well ... you see ... I uh ... hmmmm ... I kinda snapped. I apologized to her for snapping, but yeah, I still snapped. And all I said were 5 little words ... "Please don't speak for me." To me, she had just insulted me right to my face. She might as well have said, "All Coloradans love this weather so much!!! Screw those of you who are in agonizing pain because of it!!! Yippeeeeeeeeee!!!!" Ok, so maybe I'm just being oversensitive about the whole thing, but you would be too if you were fighting, tooth and nail, to keep the brutal pain spikes, spasms, and flares at bay for as long as possible ... wouldn't you??
I have faith that humanity will not change overnight ... sad but true fact. I have faith that I will continue to lead by example when it comes to empathizing with the plights of others. I have faith that, if I can just teach 1 Normie how to practice compassion, my annual fall-pain-fest will not be in vain. Normies, call or text your favorite cripple when your local weather starts to change and just let them know you're thinking of them. Stop by and visit them when you know that they aren't able to get out of the house. Ask if there's anything you could help with while you're there ... wash dishes, fold a load of laundry, make a pot of coffee, run a vacuum, something to let them know that you understand how difficult life can be for those with painful diseases and disorders. Or better yet, if you see something that needs to be done, just do it, don't ask. Most of us won't know how to respond when you're in our presence and ask if you can help us, but showing us that you're compassionate and that you care is, sometimes, all the motivation we need to keep plugging along during our darker hours.
OH!!! This is also a fabulous way to show your support for Pain Awareness Month (Sept.), and in case you didn't know, we are smack dab in the middle of Invisible Illness Week!! Mark your calendars ... November is coming (RSD Awareness Month), as is January 24, 2014 ... The 4th Annual Crazy Sock Day for Melanie!! (yeah yeah yeah ... I still have stuff that I can look forward to doing even during the crappy months!!)
Thursday, July 18, 2013
In Search Of: Simultaneous Comfort
Comfort: (n) a state of physical ease and freedom from pain or constraint.
Comfort: (v) soothe in grief, or console
I, for one, am well versed in the verb, both giving and receiving, but severely lacking of the noun. True story. Being an RSDer has made me this way. I can sympathize, empathize, console, cheer, encourage, listen, and hug with the best of them, even if it causes me physical discomfort. I can feel the emotions and act or react accordingly ... and with some degree of logic. I can turn most negatives into something positive, whether it's for myself or someone else. I have been soothed by mammals and animals and fish, mountains and oceans and meadows, sunsets and sunrises, and scents. I have been up, down, and around the emotional roller coasters of chronic pain for so long that I have begun to rely on my abilities to exude a comforting aura in distressing situations, regardless of my own physical comfort level. I have been referred to as "human Valium" and "a voice of reason amid a storm of pain." I am emotionally comfortable in my own skin as well as with the cards of life that I've been dealt, RSD and all. But today's blog isn't just about the verb......
On a comfort scale of 1 to 10, 10 being completely free of pain or constraint, I have spent the past 22 years living between a "1" and a "3." The last time I remember feeling the noun and the verb simultaneously was in 1990 and I was on a historical excursion in the Black Hills ... or maybe I was just on vacation and drunk at a blackjack table in Deadwood, SD ... either way, I remember there being no pain, no physical afflictions, no emotional traumas, and no stress-induced spasms. (well, until I got back to Colorado and the hangover kicked in for a week!!) There really are quite a few things that can help to make me feel the noun. Things like my uber soft blanket, cuddling with my mutt, my fuzzy socks, a hot cup of coffee, authentic Mexican food, and warm sunshine, but even combined, they are only a droplet in the ocean ... a "3" at best.
And then there was this morning ... I caught a brief glimpse of Simultaneous Comfort. I felt ease from my pain and constraints and I felt at peace. I'd even go so far as to call it a "5." It was brief, very brief, less than 5 minutes, but it happened. It gave me hope that maybe, just maybe, this is the beginning to more of these moments ... and logic tells me that the more of these moments I can string together, the happier I will be. Hey, happy is good, right?? And it is all thanks to that crazy cunning canine of mine!!! Until my daily prayer meeting with the porcelain god, Kiva made me feel a level of comfort that has been eluding me for all these years. Instead of whining me out of bed, she jumped up onto my bed, Army crawled up to the mound of pillows, curled herself around the top of my head, and fell asleep. Who knew that it would be something as simple as a Kiva Krown that would allow me to feel peace and comfort?!? Who knew that that moment would catapult me into action to find more things to elevate my level of comfort, and in turn, my level of happiness!?! Until today I thought the things that had brought me Simultaneous Comfort were extinct. Just like with my RSD, I had accepted it and was ok-ish with it. But now ... now I have hope that there is more out there!! More things, people, animals, places, and moments that will spark an increased level of Simultaneous Comfort. I have hope that this pure comfort level is not extinct. Logic and realism tell me that I'll never rediscover a "10" ... Hope tells me to shoot for a "7" ... Faith is what will get me to a "6."
Truth be told, I'm kinda sad right now. This morning I got a taste of something wonderful that was quickly replaced by the taste of bile. In the hopes of redirecting that sadness I need a new goal on which to focus ... aaaaaaaand I choose Simultaneous Comfort to be my new goal!!! Now that my back yard has begun to fill in and is taking on a pleasant little life of it's own, what better way to delve into the how-to-ness of achieving comfort, than from the comfort of my new sundeck, built by me, painted by me, upholstered by me, while soaking up some good ol' fashioned vitamin D?? In Search Of ... Simultaneous Comfort!! Have faith, will travel!!
Comfort: (v) soothe in grief, or console
I, for one, am well versed in the verb, both giving and receiving, but severely lacking of the noun. True story. Being an RSDer has made me this way. I can sympathize, empathize, console, cheer, encourage, listen, and hug with the best of them, even if it causes me physical discomfort. I can feel the emotions and act or react accordingly ... and with some degree of logic. I can turn most negatives into something positive, whether it's for myself or someone else. I have been soothed by mammals and animals and fish, mountains and oceans and meadows, sunsets and sunrises, and scents. I have been up, down, and around the emotional roller coasters of chronic pain for so long that I have begun to rely on my abilities to exude a comforting aura in distressing situations, regardless of my own physical comfort level. I have been referred to as "human Valium" and "a voice of reason amid a storm of pain." I am emotionally comfortable in my own skin as well as with the cards of life that I've been dealt, RSD and all. But today's blog isn't just about the verb......
On a comfort scale of 1 to 10, 10 being completely free of pain or constraint, I have spent the past 22 years living between a "1" and a "3." The last time I remember feeling the noun and the verb simultaneously was in 1990 and I was on a historical excursion in the Black Hills ... or maybe I was just on vacation and drunk at a blackjack table in Deadwood, SD ... either way, I remember there being no pain, no physical afflictions, no emotional traumas, and no stress-induced spasms. (well, until I got back to Colorado and the hangover kicked in for a week!!) There really are quite a few things that can help to make me feel the noun. Things like my uber soft blanket, cuddling with my mutt, my fuzzy socks, a hot cup of coffee, authentic Mexican food, and warm sunshine, but even combined, they are only a droplet in the ocean ... a "3" at best.
And then there was this morning ... I caught a brief glimpse of Simultaneous Comfort. I felt ease from my pain and constraints and I felt at peace. I'd even go so far as to call it a "5." It was brief, very brief, less than 5 minutes, but it happened. It gave me hope that maybe, just maybe, this is the beginning to more of these moments ... and logic tells me that the more of these moments I can string together, the happier I will be. Hey, happy is good, right?? And it is all thanks to that crazy cunning canine of mine!!! Until my daily prayer meeting with the porcelain god, Kiva made me feel a level of comfort that has been eluding me for all these years. Instead of whining me out of bed, she jumped up onto my bed, Army crawled up to the mound of pillows, curled herself around the top of my head, and fell asleep. Who knew that it would be something as simple as a Kiva Krown that would allow me to feel peace and comfort?!? Who knew that that moment would catapult me into action to find more things to elevate my level of comfort, and in turn, my level of happiness!?! Until today I thought the things that had brought me Simultaneous Comfort were extinct. Just like with my RSD, I had accepted it and was ok-ish with it. But now ... now I have hope that there is more out there!! More things, people, animals, places, and moments that will spark an increased level of Simultaneous Comfort. I have hope that this pure comfort level is not extinct. Logic and realism tell me that I'll never rediscover a "10" ... Hope tells me to shoot for a "7" ... Faith is what will get me to a "6."
Truth be told, I'm kinda sad right now. This morning I got a taste of something wonderful that was quickly replaced by the taste of bile. In the hopes of redirecting that sadness I need a new goal on which to focus ... aaaaaaaand I choose Simultaneous Comfort to be my new goal!!! Now that my back yard has begun to fill in and is taking on a pleasant little life of it's own, what better way to delve into the how-to-ness of achieving comfort, than from the comfort of my new sundeck, built by me, painted by me, upholstered by me, while soaking up some good ol' fashioned vitamin D?? In Search Of ... Simultaneous Comfort!! Have faith, will travel!!
Wednesday, June 19, 2013
"I Do It Myself"
I am a full body RSDer. Since my divorce and the adoption of Kiva in 2007, we have shared a small-ish, 2 bedroom, rental house with an average sized front yard and a back yard that has twice the square footage of our house. If it weren't for the assistance of Boulder County Housing Authority, we'd probably be living in my parents basement ... um ... not an option for this single, independent woman of a mature-ish age. My folks do help out quite a bit with occasional trips to the grocery store, hardware and garden store, pharmacies, gas for the Brown Bomber, food delivery when I can't move, just to name a few, and my brother, Houdini, offers me tremendous help with the stuff that's too heavy for me to manage, but for the most part I operate according to my 3 year old nephew's sense of logic ... "I do it myself!!" Which is why all of the projects that I take on take forever to me complete!! But ... most of them get completed eventually!!
From the day I signed the lease, I was told that I am the one responsible for all yard up-keep, but when I took possession, the entire front yard was comprised of weeds, bare spots, grassy spots, and squirrel holes. (The mowing of the front is done weekly by my Good Neighbors, God Bless 'Em!! I just have to water it!!) The back yard was a barren waste land where even earwigs went to die. Hardened Colorado clay, tall weeds, viney weeds, holes in the fence, a wibbly-wobbly cinder block patio the size of a jail cell (not that I know from personal experience, but I do watch crime movies), a sloping sidewalk that pulls all water away from the yard, 2 gates that have to be manhandled to get open and closed ... and for 5 years, I let it go, looked passed the ugliness, and just dealt with it. I couldn't afford to do anything else other than let it go. Last summer was the 1st time I tried to budget and do something to tame the wilderness by testing my abilities to tend a small vegetable garden. The deal that I made with myself was that if I could manage to gain a harvest from the few plants that I had going, I would graduate to a larger garden this year. Well I got a decent harvest last year, so I started making plans for this year's gardening attempts!! I had approached the Property Manager about splitting the costs and the labor to get the back yard tilled and seeded for grass, as well as seeding the front yard. I was told, "no." Enter Dad, stage left, to go to bat for me once again. He got her to acquiesce to a 50/50 cost/labor agreement. I was to call her at the beginning of May 2013 so we could schedule a time to proceed with the work before summer hit. It snowed on May 1st so I called her as soon as it melted (May 3rd) ... and left a message regarding the yard and the fact that I needed a new screen door. 2 days later, the Maintenance Guy showed up and gave me a new door, but knew nothing about the work to be done in the back. 2 weeks later, before my Mom and I went to Kansas to see my sister and the Munchkins, I called again ... and left another message. I called again on June 3rd and guess what?!?!?!?! Yep, I left another message. I began scraping a large swatch of clay and weeds to make room for the pallet veggie garden that I had planned. Houdini came over and tilled the area for me with a shovel and helped me place the 4 pallets. I filled them all with soil, sheep-n-peat, and plants. I was following thru with my commitment to the 50/50 agreement. This last Monday, June 17th, I called the Property Manager again. 1 more message finally warranted a return call and I was informed that the property owners had been moved to elderly assisted living and their son says that there's no money for frivolity ... a yard and a patio re-lay = a frivolous expense.
For over a year I have been promising Kiva and myself that we would have a yard to play in by the 4th of July, 2013. We can't afford to go on any trips or vacations, so having a comfortable and aesthetically pleasing yard in which we can retreat from our stagnant life has become paramount. And now it falls solely on my pain riddled shoulders. I have cancelled all plans with my Fun Folk (even though it kills me to be apart from their love and friendship), I am rerouting all of my available pennies (literally) to make my backyard as comfortable as possible, every single solitary spoon is being spent on doing all of the manual labor by myself, and the date of completion has been pushed back to July 14.
Being the independent woman that I am, I have a serious problem with asking for help. I can't plan on when I'll have the spoons to do any work, so when the mood hits, I don the gardening gloves, cargo shorts, bikini top, tennis shoes, and I get busy until I just can't function anymore. Don't yell at me for being this way. I have had 44 years to perfect this particular level of independence and getting bashed for it only pisses me off and makes me more determined to "do it myself." Over the years, my Mom, my Dad and my brother have learned how to play my "help" game. They no longer offer to help me. They stay in touch with me via texts during the daytime hours and when they know that I'm working outside, and if they have some time to spare, they just show up with their work gloves on and ask me what I need done next. This is my FAMILY that we're talking about here. The ones that I do ask for help when I'm absolutely desperate. If they haven't been able to change my independent ways, there's no way in hell that anyone else can make me change them!!
I am frustrated, discouraged, angry, disappointed, and determined. Not a great combo for someone who struggles with intense chronic pain. Last night I made the conscious decision to change my crappy attitude and focus on my determination and the final product. This morning I woke up with the dry heaves and even more determination than I had last night. I have faith that as soon as my nausea pills kick in, I'll be back out there, sweating, slaving, scraping, raking, pulling, and repeating. I have some orange plastic fencing to put around the newly seeded area (when I get it seeded) and I have more pallets being donated so that I can forego a bit of seeding and put in a little sun deck of my own design. I have faith that Kiva and I will have a haven in which we chillax and recover for the rest of the summer. I have faith that I will ignore the chastising words spewed by others and focus on my endgame!! I have faith that if/when help shows up, it will be utilized and appreciated ... but I also have faith that it will not be asked for. Yes, I'm a masochistic martyr!! To know me is to like me. To understand why I do what I do when I do it is to love me. Screw you, Property Manager!! "I do it myself!!"
From the day I signed the lease, I was told that I am the one responsible for all yard up-keep, but when I took possession, the entire front yard was comprised of weeds, bare spots, grassy spots, and squirrel holes. (The mowing of the front is done weekly by my Good Neighbors, God Bless 'Em!! I just have to water it!!) The back yard was a barren waste land where even earwigs went to die. Hardened Colorado clay, tall weeds, viney weeds, holes in the fence, a wibbly-wobbly cinder block patio the size of a jail cell (not that I know from personal experience, but I do watch crime movies), a sloping sidewalk that pulls all water away from the yard, 2 gates that have to be manhandled to get open and closed ... and for 5 years, I let it go, looked passed the ugliness, and just dealt with it. I couldn't afford to do anything else other than let it go. Last summer was the 1st time I tried to budget and do something to tame the wilderness by testing my abilities to tend a small vegetable garden. The deal that I made with myself was that if I could manage to gain a harvest from the few plants that I had going, I would graduate to a larger garden this year. Well I got a decent harvest last year, so I started making plans for this year's gardening attempts!! I had approached the Property Manager about splitting the costs and the labor to get the back yard tilled and seeded for grass, as well as seeding the front yard. I was told, "no." Enter Dad, stage left, to go to bat for me once again. He got her to acquiesce to a 50/50 cost/labor agreement. I was to call her at the beginning of May 2013 so we could schedule a time to proceed with the work before summer hit. It snowed on May 1st so I called her as soon as it melted (May 3rd) ... and left a message regarding the yard and the fact that I needed a new screen door. 2 days later, the Maintenance Guy showed up and gave me a new door, but knew nothing about the work to be done in the back. 2 weeks later, before my Mom and I went to Kansas to see my sister and the Munchkins, I called again ... and left another message. I called again on June 3rd and guess what?!?!?!?! Yep, I left another message. I began scraping a large swatch of clay and weeds to make room for the pallet veggie garden that I had planned. Houdini came over and tilled the area for me with a shovel and helped me place the 4 pallets. I filled them all with soil, sheep-n-peat, and plants. I was following thru with my commitment to the 50/50 agreement. This last Monday, June 17th, I called the Property Manager again. 1 more message finally warranted a return call and I was informed that the property owners had been moved to elderly assisted living and their son says that there's no money for frivolity ... a yard and a patio re-lay = a frivolous expense.
For over a year I have been promising Kiva and myself that we would have a yard to play in by the 4th of July, 2013. We can't afford to go on any trips or vacations, so having a comfortable and aesthetically pleasing yard in which we can retreat from our stagnant life has become paramount. And now it falls solely on my pain riddled shoulders. I have cancelled all plans with my Fun Folk (even though it kills me to be apart from their love and friendship), I am rerouting all of my available pennies (literally) to make my backyard as comfortable as possible, every single solitary spoon is being spent on doing all of the manual labor by myself, and the date of completion has been pushed back to July 14.
Being the independent woman that I am, I have a serious problem with asking for help. I can't plan on when I'll have the spoons to do any work, so when the mood hits, I don the gardening gloves, cargo shorts, bikini top, tennis shoes, and I get busy until I just can't function anymore. Don't yell at me for being this way. I have had 44 years to perfect this particular level of independence and getting bashed for it only pisses me off and makes me more determined to "do it myself." Over the years, my Mom, my Dad and my brother have learned how to play my "help" game. They no longer offer to help me. They stay in touch with me via texts during the daytime hours and when they know that I'm working outside, and if they have some time to spare, they just show up with their work gloves on and ask me what I need done next. This is my FAMILY that we're talking about here. The ones that I do ask for help when I'm absolutely desperate. If they haven't been able to change my independent ways, there's no way in hell that anyone else can make me change them!!
I am frustrated, discouraged, angry, disappointed, and determined. Not a great combo for someone who struggles with intense chronic pain. Last night I made the conscious decision to change my crappy attitude and focus on my determination and the final product. This morning I woke up with the dry heaves and even more determination than I had last night. I have faith that as soon as my nausea pills kick in, I'll be back out there, sweating, slaving, scraping, raking, pulling, and repeating. I have some orange plastic fencing to put around the newly seeded area (when I get it seeded) and I have more pallets being donated so that I can forego a bit of seeding and put in a little sun deck of my own design. I have faith that Kiva and I will have a haven in which we chillax and recover for the rest of the summer. I have faith that I will ignore the chastising words spewed by others and focus on my endgame!! I have faith that if/when help shows up, it will be utilized and appreciated ... but I also have faith that it will not be asked for. Yes, I'm a masochistic martyr!! To know me is to like me. To understand why I do what I do when I do it is to love me. Screw you, Property Manager!! "I do it myself!!"
Thursday, June 13, 2013
Not-So-Total Recall
It needs to be said again ... I hate RSD!! One of the most difficult side effects that I deal with is loss of memory. Whether it's a moment in time or just one word, my level of recall is for shit!! Ok, maybe it's not really quite that bad, but it definitely puts a big dent in my self-confidence. From what my doctor has explained to me and what I've learned through reading medical journals regarding nerves and synapses in the brain, there are misfires between synapses that cause the gaps in memory (just like the misfires that cause my affected body parts to twitch and shake). It's kinda like a car when one of the battery cables is just a little bit loose. If you turn the ignition (try to remember something) you may or may not get a connection (the actual memory of the moment). Sometimes the engine turns over (remembering that entire moment in time) but then you hit a tiny bump and the connection is lost and the car dies (forgetting one important, descriptive word to tie the memory together). And just like when you're sitting in that dead car on the side of the road, you feel like an idiot and you are absolutely positive that everyone passing by is staring at you and thinking the same damn thing. That feeling of embarrassment and shame is borderline brutal.
I have found a few ways to help tighten the connections in my brain through little kindergarten memory games, increasing my vocabulary, reading main words in a thesaurus and seeing how many synonyms I can come up with on my own ... things like that. That way when I forget a word, I can maneuver my way thru similar words until I get to the particular word for which I was originally searching. Confusing, no?? (Welcome to my world!!) But ... I can usually jumpstart those connections on my own and in a pretty timely fashion too!! Idiot status avoided!!
The words that I can't jumpstart are proper names, and herein lies my reason for blogging today. I was blessed with the opportunity to meet the Sweet Ones for lunch yesterday. Even though they only live about 30 minutes away from me, this is only the 2nd time we've been able to get together in the last few years due to all of our health issues and disdain for the winter cold. But these 2 wonderful people have become like family to me. As any conversation that involves my participation goes, we hit on some seriously random topics. We talked about our current health problems and solutions, their sons and granddaughters, stand-offs, our dogs, the Munchkins, rafting, the fires burning in CO, stuff they did growing up in Humbolt County, pharmacies, our food, and eastern countries. See? Random.
In regards to our discussion of eastern countries, we talked about Russia and then branched off into surrounding countries and the small towns and the people and the terrain. Here's the deal, I have never been to any of the countries that we discussed, but I have another good friend who has ... often!! And he sends me pictures of the people he meets, the places he goes on his "walk-a-bouts," the wild animals he encounters, the humble beauty of the small, but tight knit, communities. I really do live vicariously through his photographs and his destinations become engraved in my memory. But yesterday I couldn't do it. I couldn't remember the name of the country that he has shared the most with me. I could envision every single picture he's ever sent to me ... small cottages with short stone walls for fences, a farmer with a horse-drawn cart toting a massive mound of hay, very old headstones that bear depictions of how the individual died, a hobbit path, a dark wolf sitting vigil over his camera bag, gargoyle rain spouts ... I could picture them perfectly and in vivid color ... but there was no way in hell I could remember where they were taken. For 20 minutes I tried and tried but I couldn't make the connection. That loss of control started a mild sense of panic and I had to get it under control. I was a 20 minute drive from home, not to mention the fact that I was in public. It really bothered me that I was starting to have "an episode" in front of my dear friends. So I swallowed my pride and sent a text to my other friend claiming a "brainfart" on the name of the country. I had told the Sweet Ones, "I think it begins with an "S" and it used to be a part of the USSR." Mr Sweet One started rattling off names of eastern countries and cities and none of them jumpstarted my memory. For 30 minutes my heart slowly made it's way into my throat until my phone chimed with a return text. "Romania." I wanted to pull a Dobbie and repeatedly bash my head into the nearest wall as punishment for my stupidity. And then I wanted to headbutt the table for admitting a weakness that I had no intention of admitting, ever, to my other friend. I felt defeated.
Memory loss is just one of the many side effects of RSD that I am forced to deal with on a daily basis. It's not a brain fog because there is some amount of clarity with the memory recall. There is also a physical zap that happens in my head, just like when it happens with the twitches and hippy-hippy-shakes in the rest of my body. Not necessarily a 'pain,' but definitely a discomfort that is immediately followed by the feeling of complete idiocy.
It's tough to have faith in these circumstances. I know it won't get any better, in fact it'll probably get worse. There's nothing I can do about the shame and annoyance that I feel when it happens, and I haven't found any tricks yet for recalling proper names ... but I'm open to suggestions!! I do, however, have total faith that I will make light of these situations when they do happen. There is no need for anyone else to see or feel the anxiety that memory loss causes me, right?? Vanity, thy name is 'woman'!! Or in my case, 'Jenn' ... Hopefully soon I will be able to turn this whole incident around and make a joke out of it ... the sooner the better because this embarrassment is brutal!!
I have found a few ways to help tighten the connections in my brain through little kindergarten memory games, increasing my vocabulary, reading main words in a thesaurus and seeing how many synonyms I can come up with on my own ... things like that. That way when I forget a word, I can maneuver my way thru similar words until I get to the particular word for which I was originally searching. Confusing, no?? (Welcome to my world!!) But ... I can usually jumpstart those connections on my own and in a pretty timely fashion too!! Idiot status avoided!!
The words that I can't jumpstart are proper names, and herein lies my reason for blogging today. I was blessed with the opportunity to meet the Sweet Ones for lunch yesterday. Even though they only live about 30 minutes away from me, this is only the 2nd time we've been able to get together in the last few years due to all of our health issues and disdain for the winter cold. But these 2 wonderful people have become like family to me. As any conversation that involves my participation goes, we hit on some seriously random topics. We talked about our current health problems and solutions, their sons and granddaughters, stand-offs, our dogs, the Munchkins, rafting, the fires burning in CO, stuff they did growing up in Humbolt County, pharmacies, our food, and eastern countries. See? Random.
In regards to our discussion of eastern countries, we talked about Russia and then branched off into surrounding countries and the small towns and the people and the terrain. Here's the deal, I have never been to any of the countries that we discussed, but I have another good friend who has ... often!! And he sends me pictures of the people he meets, the places he goes on his "walk-a-bouts," the wild animals he encounters, the humble beauty of the small, but tight knit, communities. I really do live vicariously through his photographs and his destinations become engraved in my memory. But yesterday I couldn't do it. I couldn't remember the name of the country that he has shared the most with me. I could envision every single picture he's ever sent to me ... small cottages with short stone walls for fences, a farmer with a horse-drawn cart toting a massive mound of hay, very old headstones that bear depictions of how the individual died, a hobbit path, a dark wolf sitting vigil over his camera bag, gargoyle rain spouts ... I could picture them perfectly and in vivid color ... but there was no way in hell I could remember where they were taken. For 20 minutes I tried and tried but I couldn't make the connection. That loss of control started a mild sense of panic and I had to get it under control. I was a 20 minute drive from home, not to mention the fact that I was in public. It really bothered me that I was starting to have "an episode" in front of my dear friends. So I swallowed my pride and sent a text to my other friend claiming a "brainfart" on the name of the country. I had told the Sweet Ones, "I think it begins with an "S" and it used to be a part of the USSR." Mr Sweet One started rattling off names of eastern countries and cities and none of them jumpstarted my memory. For 30 minutes my heart slowly made it's way into my throat until my phone chimed with a return text. "Romania." I wanted to pull a Dobbie and repeatedly bash my head into the nearest wall as punishment for my stupidity. And then I wanted to headbutt the table for admitting a weakness that I had no intention of admitting, ever, to my other friend. I felt defeated.
Memory loss is just one of the many side effects of RSD that I am forced to deal with on a daily basis. It's not a brain fog because there is some amount of clarity with the memory recall. There is also a physical zap that happens in my head, just like when it happens with the twitches and hippy-hippy-shakes in the rest of my body. Not necessarily a 'pain,' but definitely a discomfort that is immediately followed by the feeling of complete idiocy.
It's tough to have faith in these circumstances. I know it won't get any better, in fact it'll probably get worse. There's nothing I can do about the shame and annoyance that I feel when it happens, and I haven't found any tricks yet for recalling proper names ... but I'm open to suggestions!! I do, however, have total faith that I will make light of these situations when they do happen. There is no need for anyone else to see or feel the anxiety that memory loss causes me, right?? Vanity, thy name is 'woman'!! Or in my case, 'Jenn' ... Hopefully soon I will be able to turn this whole incident around and make a joke out of it ... the sooner the better because this embarrassment is brutal!!
Monday, June 10, 2013
A Pet's Peeve
Hi ho!! Kiva the Dog here, reporting live from the Chalet. My Mommie finally took me for a walk this morning!! I was so excited that I peed on the sidewalk!! To be honest, I have already forgotten all of my leash training from last summer ... and the summer before that ... and the summer before that ... and the....well, you get the picture. In my defense, it's not my fault!! My Mommie is not confident that her body will hold up every day, especially in the winter, and there's no one for us to walk with regularly to give Mommie that assurance that if something does happen to her, there is someone there to help ... besides me, that is!! So once she's got her Spring Treatments in her and she's rebuilt some stamina, we start walking again.
We usually start out on short 2-3 block walks and then we gradually increase a block every day, but we were on a roll with our leash re-training and Mommie had enough spoons in her arsenal to donate two more to me, so we extended today's walk to about 6 blocks. I'd pull, Mommie would give a quick tug on my leash, I'd hack, I'd wheeze, we'd go on. I'd pull again, Mommie would tug the leash again, I'd hack and wheeze again, and Mommie would instruct me to, "Sit." I'd catch my breath, Mommie would say, "Let's go," I'd pull again, Mommie would make me stop again ... over and over and over ... for 4 blocks!! Finally I remembered that it was my pulling that was making me wheeze and hack so I gave Mommie some slack on my leash and the last 2 blocks were easy peezy!!! Until we got to juuuust in front of the Good Neighbor's house ... and there she was.
Mommie has been parking the Brown Bomber on the street lately because our single car garage is filled with assorted groups of buckets of gardening tools, pallets, potting soil, some stuff called Sheep-N-Peat that just smells like poop, a roll of some kind of black fabric, a wheelbarrow, and rakes and shovels and stuff. As we walked passed the Good Neighbor's house, Mommie glanced up and through her car windows she could see the form of Psycho-Crazy Lady from up the street, my neighborhood arch nemesis (2nd only to the mailman). I felt Mommie's demeanor change as she shortened my leash and drew me back to her right side. Smart Mommie started to cut through the Good Neighbor's yard so that I would see my house and pull her to the door, but Psycho-Crazy Lady popped out from in front the Brown Bomber and in the high pitched voice of a 4 year old that can't pronounce her L's and R's squealed, "Wew hewwo thewe!!" Now Mommie has talked to this woman before and that is not her normal tone!! Knowing just how much Mommie hates baby talk, my peaceful Beagle-ness skedaddled and I went full blown German Shepherd Nazi on her ass!! "Oh what's wong wiff da wittle puppy? You'we a good dwoggie, come here good dwoggie," she chirped as she patted her thigh with the hand that wasn't holding the cane. I could contain myself no longer and I lunged, barking rabidly (I'm pretty sure I could be heard for a 2 mile radius.). Mommie jerked my leash and reeled me back in but I wouldn't stop growling and snarling and barking at this woman whose mere presence causes my Mommie extra pain. (Yep, she's one of those types of human.) "Come hewe sweet dwoggie, I just want to pwet you." <Mommie's note: Are you friggin kidding me lady?? Knock it the hell off already, you've known for years that she hates you!!> Mommie cut across our yard, pulling me backwards towards the door. She fumbled her to-go cup of coffee while trying to pick our house key off of her shiny silver key chain, and cussed. I was still trying to charge the Psycho-Crazy Broad who was still talking to me in baby talk from next to Brown Bomber, still 2 octaves above middle C. Mommie stopped messing with her keys, turned around and smiled at her. Smiled!! You could have knocked me over with a feather!! Aaaaand then she opened her mouth and spoke. "We're in a mood today. It's probably best to not antagonize either of us." Mommie found our house key and turned to open the lock when she heard Psycho-Crazy Broad say, in her normal tenor-ish, exasperated voice, "Well fine!! I just wanted to say 'hi' to your dog." Mommie turned the knob on our door and shooed me inside, turned back around and said to the woman, "Unlike you, I tend to avoid animals that act like they want to rip my head off, not egg them on. You are really lucky that I'm a firm believer in leashes, because I'm not fast enough to stop her. Please, don't ever do that again," and Mommie came inside where I greeted her with a hug and a kiss and a motorboat propeller of a tail wag!! I was proud of her for saying "please."
Psycho-Crazy Broad waddled away mumbling under her breath and Mommie bee-lined for the bathroom and her 4% k-spray before she headed over to Flo for a refill. I guess all of the tugging and pulling and lunging caused her some extra pain ... dumb psycho lady made me hurt my Mommie's RSD!!! Don't think for one "wittle" second that I'll forget this!!! But Mommie bounced back in time to go plant shopping with her Mommie!! Like she's said time and again, "It's all in the distraction!"
I have faith that I will protect my Mommie from that evil presence up the street. I have faith that Mommie will continue to take me for walks and I have faith that I will save up my poop for Psycho-Crazy Broad's front yard for the rest of the week ... at least!! Don't mess with my Mommie, don't mess with her nerves, and please, for the love of everything Holy, don't use baby talk in front of us!! I don't enjoy causing my Mommie extra pain, but I will if I think I'm protecting her. Nobody messes with my Mommie, nobody!!!! ... except me, of course!! AAARRRROOOOOOOOOOOOOOO
We usually start out on short 2-3 block walks and then we gradually increase a block every day, but we were on a roll with our leash re-training and Mommie had enough spoons in her arsenal to donate two more to me, so we extended today's walk to about 6 blocks. I'd pull, Mommie would give a quick tug on my leash, I'd hack, I'd wheeze, we'd go on. I'd pull again, Mommie would tug the leash again, I'd hack and wheeze again, and Mommie would instruct me to, "Sit." I'd catch my breath, Mommie would say, "Let's go," I'd pull again, Mommie would make me stop again ... over and over and over ... for 4 blocks!! Finally I remembered that it was my pulling that was making me wheeze and hack so I gave Mommie some slack on my leash and the last 2 blocks were easy peezy!!! Until we got to juuuust in front of the Good Neighbor's house ... and there she was.
Mommie has been parking the Brown Bomber on the street lately because our single car garage is filled with assorted groups of buckets of gardening tools, pallets, potting soil, some stuff called Sheep-N-Peat that just smells like poop, a roll of some kind of black fabric, a wheelbarrow, and rakes and shovels and stuff. As we walked passed the Good Neighbor's house, Mommie glanced up and through her car windows she could see the form of Psycho-Crazy Lady from up the street, my neighborhood arch nemesis (2nd only to the mailman). I felt Mommie's demeanor change as she shortened my leash and drew me back to her right side. Smart Mommie started to cut through the Good Neighbor's yard so that I would see my house and pull her to the door, but Psycho-Crazy Lady popped out from in front the Brown Bomber and in the high pitched voice of a 4 year old that can't pronounce her L's and R's squealed, "Wew hewwo thewe!!" Now Mommie has talked to this woman before and that is not her normal tone!! Knowing just how much Mommie hates baby talk, my peaceful Beagle-ness skedaddled and I went full blown German Shepherd Nazi on her ass!! "Oh what's wong wiff da wittle puppy? You'we a good dwoggie, come here good dwoggie," she chirped as she patted her thigh with the hand that wasn't holding the cane. I could contain myself no longer and I lunged, barking rabidly (I'm pretty sure I could be heard for a 2 mile radius.). Mommie jerked my leash and reeled me back in but I wouldn't stop growling and snarling and barking at this woman whose mere presence causes my Mommie extra pain. (Yep, she's one of those types of human.) "Come hewe sweet dwoggie, I just want to pwet you." <Mommie's note: Are you friggin kidding me lady?? Knock it the hell off already, you've known for years that she hates you!!> Mommie cut across our yard, pulling me backwards towards the door. She fumbled her to-go cup of coffee while trying to pick our house key off of her shiny silver key chain, and cussed. I was still trying to charge the Psycho-Crazy Broad who was still talking to me in baby talk from next to Brown Bomber, still 2 octaves above middle C. Mommie stopped messing with her keys, turned around and smiled at her. Smiled!! You could have knocked me over with a feather!! Aaaaand then she opened her mouth and spoke. "We're in a mood today. It's probably best to not antagonize either of us." Mommie found our house key and turned to open the lock when she heard Psycho-Crazy Broad say, in her normal tenor-ish, exasperated voice, "Well fine!! I just wanted to say 'hi' to your dog." Mommie turned the knob on our door and shooed me inside, turned back around and said to the woman, "Unlike you, I tend to avoid animals that act like they want to rip my head off, not egg them on. You are really lucky that I'm a firm believer in leashes, because I'm not fast enough to stop her. Please, don't ever do that again," and Mommie came inside where I greeted her with a hug and a kiss and a motorboat propeller of a tail wag!! I was proud of her for saying "please."
Psycho-Crazy Broad waddled away mumbling under her breath and Mommie bee-lined for the bathroom and her 4% k-spray before she headed over to Flo for a refill. I guess all of the tugging and pulling and lunging caused her some extra pain ... dumb psycho lady made me hurt my Mommie's RSD!!! Don't think for one "wittle" second that I'll forget this!!! But Mommie bounced back in time to go plant shopping with her Mommie!! Like she's said time and again, "It's all in the distraction!"
I have faith that I will protect my Mommie from that evil presence up the street. I have faith that Mommie will continue to take me for walks and I have faith that I will save up my poop for Psycho-Crazy Broad's front yard for the rest of the week ... at least!! Don't mess with my Mommie, don't mess with her nerves, and please, for the love of everything Holy, don't use baby talk in front of us!! I don't enjoy causing my Mommie extra pain, but I will if I think I'm protecting her. Nobody messes with my Mommie, nobody!!!! ... except me, of course!! AAARRRROOOOOOOOOOOOOOO
Friday, May 31, 2013
And That's The Truth ... pppphhhhfffftttt
Today is May 31, 2013 ... What were you doing 22 years ago today? Were you still in school? Were you married, working and planning a family? Were you just graduating from college and embarking on a life of whatever you could imagine? Were you not born yet? Do you even remember that long ago?
22 years ago today I was 22 years old, and it was a Friday. I was working as a waitress and bartender at a restaurant called The Steak Out, I was racing my 1st season of motocross and prepping for Sunday's race, I was playing in a competitive volleyball league at the YMCA on Thursday nights, I had just signed a modeling contract earlier in the week, and I had a boyfriend ... I had my whole life ahead of me. Life was goooooooood 22 years ago today!!!
And then the sun went down and I awoke to June 1, 1991. I remember it all more clearly than I probably should ... I got up, I changed the oil and cleaned the filters on my Kawasaki 125, oiled my chain, got her washed and ready and loaded in the boyfriend's van for the races the next morning in Pueblo. I showered and then got ready for my waitress shift that evening. I packed up my race gear and an overnight bag into my 1977 Plymouth Volare so that I could drive south when I got of work at 10p.m. in order to be at the track and in the starting gates for my heat at 9a.m.
As I pulled into one of the employee parking spaces at 4:30p.m., the radio started blaring a Severe Weather Warning. We were under a tornado warning for the next 4 hours which, in restaurant terms, meant that we would be "dead." I remember thinking, "Cool!! Maybe I can get out of here early and get down to Pueblo before midnight!!" I walked in, clocked in, and got to work. The other waitress came in at 5 and I asked her if she'd be ok with me leaving early if the customers didn't come in ... and she was!! We each got 3 tables during the dinner hour and just after 6p.m. everyone everywhere, all over town, heard a <BOOM> and lost electricity. A tornado had touched down at the cemetery in the middle of town, just 4 blocks from our restaurant. It didn't stick around for more than a few seconds and the majority of the damage in it's wake was due to power loss. But ... our kitchen operated on gas stoves, grills and ovens and we had a cellar full of canned beverages left over from our last catered event, so our manager (a big-city slicker) deemed that we would stay open, even though the rest of our small city had run for home to assess any other damages. There was 1 table between 6 and 8p.m. ... we had 1 table between 2 waitresses and the manager wouldn't cut me so that I could do my sidework and hit the trail.
7p.m. was when that 1 table, 2 people, came in to eat. The other waitress was tending to the table and I had preemptively begun cleaning the waitress station. She came into the station to get dinner salads and I took a break from cleaning to chat ... gossip ... bitch ... you know, the stuff waitresses do behind the customers' and managements' backs. I was leaning back against the salad prep table which rested on top of a short reach-in refrigerator. The other waitress bent down to open the fridge door for the lettuce plates and when she kicked at the door to close it, somehow ... some way ... my right hand had turned on the cutting table and my thumb got slammed in the magnetic strip of the slamming door. I remember screaming ... I remember her trying to get the door open but couldn't ... I remember yanking my thumb out ... and I remember the immediate swelling. I had played sports for my entire life, I knew it was a sprain and I knew I'd get over the pain ... I just needed ice and aspirin.
The manager, in that genius fashion of his, told me to cash out and take off since I was going to be no good to the restaurant for the rest of the night. I wrapped a bag of ice around my right hand and drove to Pueblo ... I still had to race the next morning ... but couldn't because my right hand really hurt and I couldn't move my fingers due to the swelling.
Unbeknownst to me at the time, I had just contracted Reflex Sympathetic Dystrophy and my life was about to get turned on it's ear. The pain didn't go away like it did with a typical sprain. The swelling got worse, not better. My whole hand had become ice cold and mottled. Thanks to my father being a workman's comp attorney, I was able to navigate through the medical system fairly quickly (6 weeks) to get a diagnosis, but it has taken all of the years between then and now for me to finally be able to say (and mean) I have RSD, but it doesn't have me!! Granted, I've said it for years, but to actually mean the words and not just go through the motions of meaning the words is where I see myself today.
I will have had RSD for half of my life as of tomorrow. It may not seem like a big deal to most people, but it is a huge deal to me!! I survived!! I lived!! I defied the odds!! I have spit in the faces of the doubters and naysayers. I have fought against nights of wanting to kill myself just to escape the pain. I have fought against painkiller addiction and alcoholism. I have tried running away, but wherever I've gone the pain has always been with me like an invisible freckle that burns. I have endured the abnormal swelling, the color changes, the temperature changes, the tremors and twitches, the seizures, the burning heebie-jeebies, the internal electrical storms, the painkillers, the muscle relaxers, the seizure blockers, the protein powders, the jokes and disappointments expressed by family and friends at my expense, and the dumb, but heartfelt, suggestions of what I should do for the varying symptoms. I've been called a liar, a faker, an attention seeker, a pill popper, an addict, and an alcoholic (ok, so that one was true). I've been dumped, forgotten, excluded, and chastised because of RSD. But ... I ... am ... still ... here!!! I am still fighting!! I am still living!! And I am still loving!! I AM A SURVIVOR!! I refuse to be a victim, I refuse to let other people affect my pain, I refuse to let RSD keep me down, and I refuse to give up!!
June 1, 1991- June 1, 2013 ... 22 years ... My Golden Painiversary!! I have faith that I will wake up tomorrow and shout, "F U RSD!!" I have faith that Kiva will don her orange bandanna and boa to lead the FURsday festivities on Facebook. I have faith that I will keep living and loving in spite of this damn disease!! RSD has taken SO much away from me, but I have replaced those things with new and amazing people and activities. It really is faith that gets me through each and every day. Whether it's a good day or a bad day, my faith in tomorrow keeps me moving forward. Fuck you, RSD!! And um ... thank you for making me a better person and a stronger warrior!!
22 years ago today I was 22 years old, and it was a Friday. I was working as a waitress and bartender at a restaurant called The Steak Out, I was racing my 1st season of motocross and prepping for Sunday's race, I was playing in a competitive volleyball league at the YMCA on Thursday nights, I had just signed a modeling contract earlier in the week, and I had a boyfriend ... I had my whole life ahead of me. Life was goooooooood 22 years ago today!!!
And then the sun went down and I awoke to June 1, 1991. I remember it all more clearly than I probably should ... I got up, I changed the oil and cleaned the filters on my Kawasaki 125, oiled my chain, got her washed and ready and loaded in the boyfriend's van for the races the next morning in Pueblo. I showered and then got ready for my waitress shift that evening. I packed up my race gear and an overnight bag into my 1977 Plymouth Volare so that I could drive south when I got of work at 10p.m. in order to be at the track and in the starting gates for my heat at 9a.m.
As I pulled into one of the employee parking spaces at 4:30p.m., the radio started blaring a Severe Weather Warning. We were under a tornado warning for the next 4 hours which, in restaurant terms, meant that we would be "dead." I remember thinking, "Cool!! Maybe I can get out of here early and get down to Pueblo before midnight!!" I walked in, clocked in, and got to work. The other waitress came in at 5 and I asked her if she'd be ok with me leaving early if the customers didn't come in ... and she was!! We each got 3 tables during the dinner hour and just after 6p.m. everyone everywhere, all over town, heard a <BOOM> and lost electricity. A tornado had touched down at the cemetery in the middle of town, just 4 blocks from our restaurant. It didn't stick around for more than a few seconds and the majority of the damage in it's wake was due to power loss. But ... our kitchen operated on gas stoves, grills and ovens and we had a cellar full of canned beverages left over from our last catered event, so our manager (a big-city slicker) deemed that we would stay open, even though the rest of our small city had run for home to assess any other damages. There was 1 table between 6 and 8p.m. ... we had 1 table between 2 waitresses and the manager wouldn't cut me so that I could do my sidework and hit the trail.
7p.m. was when that 1 table, 2 people, came in to eat. The other waitress was tending to the table and I had preemptively begun cleaning the waitress station. She came into the station to get dinner salads and I took a break from cleaning to chat ... gossip ... bitch ... you know, the stuff waitresses do behind the customers' and managements' backs. I was leaning back against the salad prep table which rested on top of a short reach-in refrigerator. The other waitress bent down to open the fridge door for the lettuce plates and when she kicked at the door to close it, somehow ... some way ... my right hand had turned on the cutting table and my thumb got slammed in the magnetic strip of the slamming door. I remember screaming ... I remember her trying to get the door open but couldn't ... I remember yanking my thumb out ... and I remember the immediate swelling. I had played sports for my entire life, I knew it was a sprain and I knew I'd get over the pain ... I just needed ice and aspirin.
The manager, in that genius fashion of his, told me to cash out and take off since I was going to be no good to the restaurant for the rest of the night. I wrapped a bag of ice around my right hand and drove to Pueblo ... I still had to race the next morning ... but couldn't because my right hand really hurt and I couldn't move my fingers due to the swelling.
Unbeknownst to me at the time, I had just contracted Reflex Sympathetic Dystrophy and my life was about to get turned on it's ear. The pain didn't go away like it did with a typical sprain. The swelling got worse, not better. My whole hand had become ice cold and mottled. Thanks to my father being a workman's comp attorney, I was able to navigate through the medical system fairly quickly (6 weeks) to get a diagnosis, but it has taken all of the years between then and now for me to finally be able to say (and mean) I have RSD, but it doesn't have me!! Granted, I've said it for years, but to actually mean the words and not just go through the motions of meaning the words is where I see myself today.
I will have had RSD for half of my life as of tomorrow. It may not seem like a big deal to most people, but it is a huge deal to me!! I survived!! I lived!! I defied the odds!! I have spit in the faces of the doubters and naysayers. I have fought against nights of wanting to kill myself just to escape the pain. I have fought against painkiller addiction and alcoholism. I have tried running away, but wherever I've gone the pain has always been with me like an invisible freckle that burns. I have endured the abnormal swelling, the color changes, the temperature changes, the tremors and twitches, the seizures, the burning heebie-jeebies, the internal electrical storms, the painkillers, the muscle relaxers, the seizure blockers, the protein powders, the jokes and disappointments expressed by family and friends at my expense, and the dumb, but heartfelt, suggestions of what I should do for the varying symptoms. I've been called a liar, a faker, an attention seeker, a pill popper, an addict, and an alcoholic (ok, so that one was true). I've been dumped, forgotten, excluded, and chastised because of RSD. But ... I ... am ... still ... here!!! I am still fighting!! I am still living!! And I am still loving!! I AM A SURVIVOR!! I refuse to be a victim, I refuse to let other people affect my pain, I refuse to let RSD keep me down, and I refuse to give up!!
June 1, 1991- June 1, 2013 ... 22 years ... My Golden Painiversary!! I have faith that I will wake up tomorrow and shout, "F U RSD!!" I have faith that Kiva will don her orange bandanna and boa to lead the FURsday festivities on Facebook. I have faith that I will keep living and loving in spite of this damn disease!! RSD has taken SO much away from me, but I have replaced those things with new and amazing people and activities. It really is faith that gets me through each and every day. Whether it's a good day or a bad day, my faith in tomorrow keeps me moving forward. Fuck you, RSD!! And um ... thank you for making me a better person and a stronger warrior!!
Thursday, May 23, 2013
Repeat After Me, "Coffee is Good"
This may surprise some of you, but I love coffee!! I love the smell of coffee, I love the taste of coffee, and I love the energy boost that coffee gives me!! What I don't love is how I get judged, questioned, and chastised by people who don't understand my affinity for coffee. So now it is time to inform the uninformed and set the record straight.
Being an RSDer is a challenge in and of itself. The pain, the ever morphing symptoms, the balancing of medications, and the restructuring of a semblance of a life is a daily battle ... and it's friggin exhausting!! Normies, think back to the last time you were sick or injured. You slept quite a bit, didn't you? The drugs that the doctor gave you made you feel woozy and hazy, didn't they? Your energy level was lower and it took time for you to heal and bounce back to your "normal" self, right? Here's the deal ... there is no cure for RSD, therefore I do not heal, nor do I bounce back. I need "spoons" to get through my day, and without caffeine there are no spoons available to me outside of an adrenaline rush, and I don't get many of those. One of the biggest problems that an RSDer faces is movement of our affected body parts. It hurts, dammit!! But we have to move or we fall victim to atrophy and loose the use of an appendage all together. In layman's terms, atrophy is when when a body part (arm, hand, fingers, leg, foot, toes) begins to turn in on itself/themselves from lack of use. The muscles waste away and there isn't much hope of getting them to straighten out again. Soooooo ... I've gotta move in order to keep myself at my own personal "normal," and that's where coffee comes into play for me. It gives me the energy to move!!
Yes, I know that caffeine is a stimulant and I know that it is not beneficial to my central nervous system. I am constantly informed by people, who think they know better than I do, that my caffeine intake is the reason that I don't sleep well. Ahem!! You ... are ... WRONG!! For the most part, I do not have a problem falling asleep. I am so exhausted from fighting pain all day that I pass out at night!! Some nights it takes a little longer for me to calm the muscle spasms and skin fizzies so that I can sleep, but I can still fall asleep!! It's not the caffeine that inhibits my ability to stay asleep either, it's the pain!!!! All it takes is for me to roll over in my sleep and tweak an arm, or get a leg hooked on the other leg or trapped in the top sheet, or another spasm hits and a flailing body part hits a wall and I'm awake!! If it's a mild "whack" I can usually get myself back to sleep, but if it's a major "whack" I'm up for good!! Some nights are insomnia nights that have nothing to do with my caffeine intake and everything to do with my pain levels. On those nights I try to stay away from the coffee until 3a.m. in order to give my body a little bit of time to rest and reset, even if there's no sleep involved ... but I'll hit the button on Flo (my coffee maker) right at 3 so that I can start gathering up my energy (spoons) for my day ahead.
Life as an RSDer is not easy, but life, in general, is worth staying awake for!! When I was married, my ex-husband could not stand the smell of coffee. It made him physically ill. For those years, my coffee drinking was at a minimum and I slept 12-14 hours a day, on average, due to the pain and painkillers and muscle relaxers. I missed out on a lot of life things, good and bad. Since my divorce 5 years ago, I have been able to drink my coffee any time, anywhere, and I have missed out on very few life things in comparison!! Some of my fellow RSDers have picked up on the whole caffeine/spoons connection and they clutch their cups every bit as much as I do, I just admit it more often. Some of them drink tea or soda pop to get their caffeine buzz, I have opted for coffee. I have been known to swap out my hot coffee for an ice cold Pepsi, but coffee is always my first choice, hot or cold.
My trips to my favorite coffee shop, Ziggi's, have been called into question as well, but for financial reasons, not caffeinated ones. The answer there is just as simple ... No, I can't afford all of my trips to Ziggi's, but every few months my parents will give me a $20 Ziggi's gift card (I call this my Emergency Relief Fund) and most of my trips happen during the week after I get my Social Security Disability check. You know, while I still have money!! (FYI - I buy Folger's Black Silk coffee in bulk for my daily brews.) For the other 3-4 weeks per month, I use my gift card or the free punch on my Ziggi's Punch Cards (I have a few saved up). So I guess when push comes to shove, I really can afford my Ziggi's runs so the naysayer's argument is moot once again!! :-P
I have faith that I will continue to drink my coffee and advertise my need for it. I have faith that my family and friends will continue to come to my defense when they hear other people question my "addiction" to coffee, because they know that my real "addiction" is to life things, not the coffee. I have faith that my 2nd pot of coffee will taste every bit as good as my 1st and it will give me the strength, energy, and spoons that I need to get through my day.
Being an RSDer is a challenge in and of itself. The pain, the ever morphing symptoms, the balancing of medications, and the restructuring of a semblance of a life is a daily battle ... and it's friggin exhausting!! Normies, think back to the last time you were sick or injured. You slept quite a bit, didn't you? The drugs that the doctor gave you made you feel woozy and hazy, didn't they? Your energy level was lower and it took time for you to heal and bounce back to your "normal" self, right? Here's the deal ... there is no cure for RSD, therefore I do not heal, nor do I bounce back. I need "spoons" to get through my day, and without caffeine there are no spoons available to me outside of an adrenaline rush, and I don't get many of those. One of the biggest problems that an RSDer faces is movement of our affected body parts. It hurts, dammit!! But we have to move or we fall victim to atrophy and loose the use of an appendage all together. In layman's terms, atrophy is when when a body part (arm, hand, fingers, leg, foot, toes) begins to turn in on itself/themselves from lack of use. The muscles waste away and there isn't much hope of getting them to straighten out again. Soooooo ... I've gotta move in order to keep myself at my own personal "normal," and that's where coffee comes into play for me. It gives me the energy to move!!
Yes, I know that caffeine is a stimulant and I know that it is not beneficial to my central nervous system. I am constantly informed by people, who think they know better than I do, that my caffeine intake is the reason that I don't sleep well. Ahem!! You ... are ... WRONG!! For the most part, I do not have a problem falling asleep. I am so exhausted from fighting pain all day that I pass out at night!! Some nights it takes a little longer for me to calm the muscle spasms and skin fizzies so that I can sleep, but I can still fall asleep!! It's not the caffeine that inhibits my ability to stay asleep either, it's the pain!!!! All it takes is for me to roll over in my sleep and tweak an arm, or get a leg hooked on the other leg or trapped in the top sheet, or another spasm hits and a flailing body part hits a wall and I'm awake!! If it's a mild "whack" I can usually get myself back to sleep, but if it's a major "whack" I'm up for good!! Some nights are insomnia nights that have nothing to do with my caffeine intake and everything to do with my pain levels. On those nights I try to stay away from the coffee until 3a.m. in order to give my body a little bit of time to rest and reset, even if there's no sleep involved ... but I'll hit the button on Flo (my coffee maker) right at 3 so that I can start gathering up my energy (spoons) for my day ahead.
Life as an RSDer is not easy, but life, in general, is worth staying awake for!! When I was married, my ex-husband could not stand the smell of coffee. It made him physically ill. For those years, my coffee drinking was at a minimum and I slept 12-14 hours a day, on average, due to the pain and painkillers and muscle relaxers. I missed out on a lot of life things, good and bad. Since my divorce 5 years ago, I have been able to drink my coffee any time, anywhere, and I have missed out on very few life things in comparison!! Some of my fellow RSDers have picked up on the whole caffeine/spoons connection and they clutch their cups every bit as much as I do, I just admit it more often. Some of them drink tea or soda pop to get their caffeine buzz, I have opted for coffee. I have been known to swap out my hot coffee for an ice cold Pepsi, but coffee is always my first choice, hot or cold.
My trips to my favorite coffee shop, Ziggi's, have been called into question as well, but for financial reasons, not caffeinated ones. The answer there is just as simple ... No, I can't afford all of my trips to Ziggi's, but every few months my parents will give me a $20 Ziggi's gift card (I call this my Emergency Relief Fund) and most of my trips happen during the week after I get my Social Security Disability check. You know, while I still have money!! (FYI - I buy Folger's Black Silk coffee in bulk for my daily brews.) For the other 3-4 weeks per month, I use my gift card or the free punch on my Ziggi's Punch Cards (I have a few saved up). So I guess when push comes to shove, I really can afford my Ziggi's runs so the naysayer's argument is moot once again!! :-P
I have faith that I will continue to drink my coffee and advertise my need for it. I have faith that my family and friends will continue to come to my defense when they hear other people question my "addiction" to coffee, because they know that my real "addiction" is to life things, not the coffee. I have faith that my 2nd pot of coffee will taste every bit as good as my 1st and it will give me the strength, energy, and spoons that I need to get through my day.
Wednesday, May 8, 2013
You Reap What You Sow
Yesterday I finished cleaning out and tilling all of my flower and veggie beds. Actually, I had finished both of the veggie beds in the back yard before the last snowstorm, but the long flower bed in front of the house was still blanketed with last fall’s crusty and membrane-y leaves, peanut shells and corn cobs that had been deposited there during the winter months by my neighborhood squirrel family, a few scattered weeds that thrive in the muck, large and small twigs that had blown down from my big wet-rotted tree, and the dead stems from last summer’s snapdragons. There was enough crap in that 17’x1’ section to fill a lawn and leaf trash bag ¾ full.
As I sat down in one of the Adirondack chairs on my front porch to bask in the satisfaction of my work and mentally plot out this year‘s arrangements, Houdini pulled up and got out of his car. He skulked his 6’4” frame up the walkway and slumped into the chair opposite me. My brother has recently begun dealing with his own “invisible issues” and knows that when he’s feeling defeated by them he can come to me for empathy, validation, and/or an emotional boost. Our “issues” are different, but pain is pain. He knows that I won’t compare my pain to his, nor will I cut him off to interject anecdotes of my own (unless he asks). I won’t tell him what to do or how to feel (unless he asks). Don’t misunderstand me here, I am definitely not saying that I don’t want to chime in and cut him off and tell him what to do and how he should do it. I’m just saying that I am pretty dang conscious of how angry and frustrated I feel when other people do that to me, so I try not to do it to anyone else. I’ve been angry and frustrated enough after fighting this daily battle against RSD for 20+ years without someone else trying to minimize what I feel by telling me that they know exactly how I feel or that they feel worse. Everybody feels pain and everybody feels pain differently. Some of us have just have more experience coping with pain and are therefore better equipped to deal with others who are in pain.
For 15 minutes he vented and I listened. Just getting stuff off of his chest was all that he needed to clear his head and devise a logical plan of attack. I complimented him on being able to sort things out before reacting this time and reminded him that he was doing the right thing. He looked over at me, sighed, smiled, and said, “Thanks, Jenn.“ And just as abruptly as Houdini had appeared, he vanished, but he left with his head and shoulders held a little higher and there was even some determination in his step. I took a deep breath and turned my attention back to the freshly tilled flower bed before me.
I have 6 snapdragons and 1 lily making their yearly comebacks. Perennials just seem to bring me comfort. I love that they remind me of a phoenix rising from it’s own ashes. I love that I can arrange smaller annuals around them to accessorize their statuesque beauty every year, and I love that I can change up the accessories if I‘m feeling the need for something a little different. I love that I have finally gotten over my chronic case of Black Thumb and, despite my chronic case of RSD, I can get down on the ground, dig in the dirt, and make pretty things grow and blossom. I let my mind drift to my barren back yard and the plans I have for creating a pallet garden haven as well as where I should place the veggies that I had started from seeds and were now big and green and ready to be planted outside so that they can produce healthy food for my tummy.
And then it hit me … If you sow it, it will grow. If you nurture it, it will flourish. If you give it space to take root, it will blossom. If you throw it out there without watering it or giving it sunlight or removing the weeds, it will die. And, if you can’t tell, I’m not just talking about plants anymore.
Planting seeds of vegetation and planting seeds of hope aren’t all that different, and in some cases, those seeds are the difference between survival and defeat. My opinion is that most people fall short during the germination process. Anyone can put one seed in the dirt just as easily as anyone can offer one kind word or one compliment. But then what? Most people turn and walk away thinking that they’ve made their point and done their part by planting that one seed. And then it’s “out of sight, out of mind.” But to the person that depends on that seed for their very survival, it’s never out of sight, nor is it ever out of mind. Stomachs grumble with hunger and briefly elated souls crumble and darken with despair, both causing added physical pain.
But … If someone were to take the time to tend to that seed giving it the nutrients and encouragement that it needs to sprout, the warmth and space that it needs to take root, the light and love that it needs to grow, and the continuous support that it needs to bear fruit, then that someone would be the one that would be able to enjoy and savor what is produced, whether it’s a watermelon, a bell pepper, or a genuine smile or laugh.
I have faith that I have been that someone in the lives of a few of the people you’ve read about on this blog, and I have faith that I will continue to nurture the seeds of hope that I have planted within them. If I can be that someone for them and they, in time and in turn, can be that someone for another person in pain, then I can say that I planted a perennial of hope that will be around to bloom for years to come.
Monday, May 6, 2013
The Girl Who Cried "Wolf"
I saw a wolf a few weeks ago. A real live wolf. I didn't see it in a zoo, or in a cage, or in a local wildlife habitat, or on tv. It wasn't a dog, or a halfbreed, or a fox, or a coyote. It was, most definitely, a wolf. It was about 100 yards away in the middle of a snowy mountain meadow and it was mesmerizing. There were 3 of us in the truck and we all crept out (ok, they crept, I quietly flumped) to try to get a better look without scaring it away. There hadn't been a documented wild wolf sighting in Colorado since February 2007. We didn't know that historical little tidbit at the time, we only knew that we were face to face with a live wolf! We stood side-by-side at the edge of the gravel mountain road and gawked at the majestic creature for 30-40 seconds before we remembered we had cameras with us. Our fingers clicked the shutters frantically as the wolf turned and slowly made it's way away from us, down a slight slope, and into a small grove of leafless aspen trees. Something happened to me as the wolf descended into the trees. Something familiar and spiritual and surreal and confusing and tangible all at the same time. Something that I wasn't sure I could ever explain to someone who hadn't experienced it for themselves. The wolf stopped right at the treeline and turned back to look at us as if she were some old Native American medicine woman leaving us with some parting words of ancient wisdom. None of us could speak as she disappeared behind the wall of white bark.
It was like I recognized her from somewhere. Stranger still, it was like she had recognized me. Don't ask me how I know she's a "she," I just know. This may sound completely crazy, bizarre-o, loo-loo, and/or bonkers, but I really don't care. This was the sign, the spiritual 'ah-ha' moment, for which I had been asking and praying for a very long time, and it all happened faster than a single flutter of a hummingbird's wings.
I was a week away from treatment and physically unable to process the emotions of everything that had happened in that moment in the meadow, but when I got home that evening and had finished crying over the pain, I wrote down what I knew to be the facts of the experience. Finally, 7 days post treatment, 2 weeks after the encounter, I was able to re-read my facts, close my eyes, and reexamine the feelings and emotions from that day. I recaptured the solace of her presence and had begun to realize exactly what it meant for me. The wolf imparted that when I was physically ready and able to accept her gift, it would be out there waiting for me. She empathized with my loneliness and assured me that the time for the void to be filled was near ... very near. Well ... she was right. I went out to dinner with a good friend last week (neither of us knowing about the other's fondness for sushi until we sat down for sushi) and spent all day Saturday with my Dad, garage sale-ing and flea market-ing. (If you know my Dad, then you know how odd the day's activities felt ... in a good way, though!!)
Go ahead and roll your eyes at me and say "whatever Jenn" under your your breath. I'm used to it. I'm an Oldtimer in the wonderful world of RSD. I'm used to people not believing me. I'm used to the eye rolls and the brush offs. I'm used to being judged and mocked and called a liar due something that's out of my control but is every bit as real as my own existence. I didn't plan on getting a life-altering, debilitating, frustrating, painful disease, any more than I planned on seeing the wolf ... but they both happened. I can't explain why I felt the way felt in her presence any more than I can explain why one day I feel great and look normal, and the next day I feel like I want to rip off my skin and scream in agony ... yet both feelings are equally real. I can't explain every single one of my ever-morphing symptoms any more than I can explain how I completely understood every word that that animal didn't utter to this human ... and yet to me, it all makes perfect sense. RSD has taught me to believe in the unexplainable and that's why I believe that the wolf spoke to me. Not to my ears, but to my soul.
Having faith is great. Holding on to faith is hard. But if you hold on long enough and are willing to look beyond the scope of what cannot be explained, faith brings fruition and reward ... and sometimes it happens in totally bizarre-o ways!!
Side note: Regarding the plethora of shots that the 3 of us took of the wolf, only one single picture turned out ... mine. <insert theme from Twilight Zone here>
Friday, April 26, 2013
Now I Get To Do Some Stuff
Day 2 post-treatment and I feel like dancing around my house to Katrina and the Waves' song I'm Walking On Sunshine!! (And don't it feel good???) But I won't. I am so not doing anything dumb yet!! Spraining my knee the day after my last set of blocks back in October has me acting a little more responsible ... and a little more paranoid this time. In all honesty, I haven't felt this great this soon after treatment in over 4 years, and I really don't want to blow it!! I want to have an amazing summer and that has to start with a smart start to my spring and my spring starts now!! The snow is finally gone and my little section of Colorado is back into the 60's with our sights set on the 70's this weekend. My doors and windows are open, my ceiling fans are twirling, and I'm blowing out the stink of the last 4 weeks!! I'm doing laundry (just the washing and drying part because folding constitutes "dumb" in my book) and trying to catch up on some writing. Off to a smart start ... CHECK!!
As much as I despise the way large doses of Ketamine make my head and tummy feel, the benefits that I get in the pain relief department and the eradication of my depression are enough to make me the damn drug's poster child!! If you're an RSDer and haven't looked into some form of Ketamine treatment yet, I strongly urge you to start researching your possibilities!! Take it from General Jenn, the 21+ year pain warrior, of all of the drugs that have been administered into my system, Ketamine has been my diamond in the rough!!
And now ... I get to make plans to do stuff again. I get to look forward to stuff again. And within the last 48 hours, I already have lined up some stuff ... some fun stuff ... some good stuff ... some awareness stuff ... aaaaand some other stuff, but I'll mix it in with some of the good stuff to create some balanced stuff. YAY STUFF!!!
The most important of all of this stuff that I get to do is plan my awareness event and celebrate my 22nd anniversary of surviving Reflex Sympathetic Dystrophy on Saturday, June 1, 2013. This is the day that I will have had this bat rastard of a disease for half of my life. This is the aptly and duly named FURSDay!! This is the day that I'll ask every single one of my friends to put something orange on their furbabies, take a picture, and tag me in it on Facebook. This is the day when I will gather with the majority of my favorites and give the double middle finger salute while shouting "FU RSD" over and over (even in front of my Mom). Because this is the anniversary of the day when my life was tragically altered just by slamming my thumb in a refrigerator door. This is the celebration of 8,030 days that I didn't quit or give up, even though I desperately wanted to throw in the towel on some of those days. This is the day when I will have fought against depression and anxiety for 192,720 hours. This is the day I will have fought through the mind-blowing pain for 11,563,200 minutes. (yes, I used a calculator) This is my day to own!! I may have full body RSD, but full body RSD does not have me!! I may have to do stuff differently, but I can still do stuff!! And this particular anniversary will be the day that I turn the page and begin a new chapter. I have no clue what it's title will be or even what will get written on it's pages, but I can't wait to find out!!
I have faith that I will continue to fight and celebrate the wins, even the little ones. I have faith that I will use my renewed lease on life to do good stuff, for me as well as for the ones I love. I have faith that I will keep walkin' on sunshine ... for the next 5 months anyway ;) ... HAPPY SPRING!! GO DO STUFF!!
Monday, April 15, 2013
Flare and Self-Loathing in Longmont
I have no one to blame but myself, and believe me, I tried to not to. (Poor grammar, I know, but that was the exact phrase that exploded from my brain) This pop-reality tidbit was just the catalyst I needed to get the funk vacuum to finally spit me out yesterday ... own my painful mistakes, learn from my painful mistakes, and make a conscious effort to never repeat painful mistakes. If this is any indication as to how icky, cranky, and grumpy I was and how much pain I was in, I couldn't even talk to my BFF!! I honestly couldn't stand to be around myself and I wasn't about to inflict that piss poor attitude on anyone else, especially someone that I love and respect!! (So to my Mom, my Dad, and my ColoAngel, I love you ... I'm sorry ... I'm back!! And to Houdini, thanks for the oostakaka kick during my Funk Fest. Brother, you're the only one that could have gotten away with it unscathed ... but beware of paybacks.)
I knew better. With only 2 weeks left until my next treatment, and my body completely depleted of my last Ketamine infusion, I should have advocated for myself instead of allowing myself to be flown around by the seat of someone else's pants. Cold, windy, snowy Colorado weather (we call it "Spring") brings enough challenges without me adding insult to injury by developing resentments from travelling the winding back roads of the Rocky Mountains for 3 hours, in and out of 4 different pressure systems, in a vehicle that lurched and lunged and vibrated. I should have spoken up and offered a Plan B to a friend who was visiting from out of state, and also the driver, but I was happy to finally get to spend some time with him, so I didn't ... and I am still paying for it 5 days later. This is me "should-ing" on myself.
I am constantly telling other RSDers to stick up for themselves, to be their own best advocate. I didn't do that and now I am the one who has to live with those consequences. To try to expedite the pain induced funk, I met a few girlfriends and 1 husband for dinner on Friday night, but I was only able to get through the fried pickles appetizer before my body began revolting against my clothes, which caused the nausea to kick up, which caused my early retreat to the Chalet. One of my girlfriends (we'll call her Mrs Claus since she lives in North Pole, Alaska, and cooks and sews like it's nobody's business) asked me a very valid question before my abrupt departure, "Can't you get treatments more often?" The answer is anything but simple. Yes, I could get my Ketamine Nerve Blocks more often than just twice per year, but I won't. I'm only in the hospital (Day Surgery) for 3-4 hours every October and April, but it takes almost a whole week for me to fully recover from the procedure. The dates are my choice and I am only willing to do it every 6 months. For me, April and October make the most sense right now. My October blocks prime me for Halloween, Thanksgiving, Munchkin Birthdays, Christmas, and my birthday. My April blocks prime me for tornado chasing season, the Munchkin's summer break, tons of laughs in the out-of-doors with The Fun Folk, and shorts and flip flops.
What happens is this: My doc knocks me out with Ketamine and Versaid, and then he proceeds to turn my slight figure into a human pin cushion with injections of Ketamine into my central nervous system. Yes, the blocks make my life livable again, but the time and effort it takes to recover from 12+ injections and a drug that makes my worst nightmare feel like a reality is just not worth it to me. And this doesn't even take into account the fact that I abhor how Ketamine makes my stomach feel. I'll probably lose another 3-4 pounds during that post treatment week. <sigh> This is my life and this is how I have to live it. There is no truer phrase than "there is a method to my madness" when trying to explain to people how I do what I do when I do it. I should have stuck to my methods.
I have faith that I will get through these next 9 days. I have faith that once I've had my blocks and the side effects have worn off, I will be able to get back to living. I have faith that I will continue to make mistakes that exacerbate my pain, but I have faith that I will continue to learn from them. I am my own best advocate and I will speak up!!!!
What happens is this: My doc knocks me out with Ketamine and Versaid, and then he proceeds to turn my slight figure into a human pin cushion with injections of Ketamine into my central nervous system. Yes, the blocks make my life livable again, but the time and effort it takes to recover from 12+ injections and a drug that makes my worst nightmare feel like a reality is just not worth it to me. And this doesn't even take into account the fact that I abhor how Ketamine makes my stomach feel. I'll probably lose another 3-4 pounds during that post treatment week. <sigh> This is my life and this is how I have to live it. There is no truer phrase than "there is a method to my madness" when trying to explain to people how I do what I do when I do it. I should have stuck to my methods.
I have faith that I will get through these next 9 days. I have faith that once I've had my blocks and the side effects have worn off, I will be able to get back to living. I have faith that I will continue to make mistakes that exacerbate my pain, but I have faith that I will continue to learn from them. I am my own best advocate and I will speak up!!!!
Friday, April 12, 2013
What Comes After "Tired" Again?
I'm tired. Tired of always having to be so strong. Tired of fighting the beast inside my body. Tired of listening to the voices in my head. Tired of feeling let down and forgotten. Tired of not being able to sleep. Tired of being the only person in whom I can trust, and sometimes that's a little iffy. Tired of failing and feeling defeated. Tired of always being alone. Tired of the ever-looming funk that's just waiting for me to let my guard down a teeny tiny bit so that it can engulf me. Tired of people who claim that they "get it" or want to "get it" but don't and/or won't. Tired of being taken for granted. Tired of trying things differently and still getting the same damn results. Tired of people taking advantage of my spoon supply. Tired of swimming in a size 2. Tired of not being good enough.
I thought I had finally balanced the scales of karma. I have accepted my RSD, I've turned my life around and I have stopped acting selfishly. I don't hate, I won't lie, I do not judge, and I actively avoid drama. All of these were conscious decisions that have become the core of my personality. And yet I'm still unhappy. I'm sober, I'm generous, I'm caring, and I'm no closer to true happiness than I was when I started making all of these life changes 8 years ago. I feel as if my RSD is a real life Dementor. (had to give a little shout out to my Harry Potter marathon yesterday) ... So now what?? What do I change about myself this time to try to find that elusive feeling of true happiness?? How do I go about filling the void?? (Ugh ... I resent letting the funk vacuum suck me up, but there was nothing I could do to stop it. I let down my guard for 2 seconds and started to breath a sigh of relief, but then <whoosh> ... and now here I am, defeated and depleted ... again.)
Yes, I have made significant strides in my life. Yes, I have overcome some serious obstacles. Yes, I am still alive and kicking and able to tell my story. Yes, I have a dog, parents, and siblings that love me very much and are proud of me ... finally. Yes, I have created a few memories that will live in my heart forever. Yes, I have volunteered and given of myself in support of others. Yes, I appreciate the life I do have. But now what?? How do I go about relighting the spark within me??
I have faith that I'll get over myself and kick the pity-pot out from under my bony ass. I have faith that I will rediscover the inspiration and direction that keeps me fighting. I have faith that this too shall pass. I have faith that I will keep trying and failing until something finally clicks, no matter how discouraged I get. 12 days until my next Ketamine treatment to recharge my batteries ... and then I'll try ... again.
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