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!!

 

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!!!  

...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!!)