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!!
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