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!!!
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