Friday, April 26, 2013

Health Activist Writers Challenge day 6 (write a letter to the dragon)

Today’s Prompts:
  • Write a letter to your condition – what do you want to get off your chest?

Aww, Geeze... I would rather go without my pain meds for a month than do THIS writing assignment  but "no pain, no gain" right? I am not sure HOW to do this without sounding like a whiney baby or an angry biter person... when in reality I am neither.... I have decided the best way to handle this writing topic is to just sit here and write...not think about it, don't plan it out, TRY not to fear judgment (this is the type of topic I was afraid of doing when I was trying to decide if I was going to do this 30 day challenge... A few really good friends reminded me that this really isn't about's about awareness and a way I can help educate people...they were right and I am being a coward.... so here goes...

Dear Dragon, 

It would be too easy to say that I hate you, that I hate what you have done to my body and my reality that doesn't even begin to scratch the surface of how I feel. When I look at my daughter's I can see what this has done to them and what they are giving up just so that I can "feel decent" on a good day. I had promised my girls if they got in to college I would take care of everything, my girls KNEW growing up that college was not an OPTION it was a see as a teen mom, I made many sacrifices for my children, much more than most people will ever realize...all so they could have  the future they dreamed of, I raised them to know that the only thing that held them back was themselves...if you want it bad enough, you CAN make it happen.... I showed them that with hard work and sacrifice any dream could become a reality. My girl's set high expectations for themselves and were overachievers in their individual areas of interest....they KNEW that I would do exactly what I for their education to give them the future they had worked for...

Then BOOM, all of a sudden this woman that had taught them you get up, go to work and do what you have to do every day no matter HOW you feel...yea, suddenly not only could I NOT get up and go to work... I couldn't even go to the bathroom by myself...Mind over matter I had taught them...God knows I TRIED to live up to the example I had always set for them...I drug myself into the office with temps over 104 and somehow even made it through most days... I can do this I told myself.... I have to pay for their college education...

I had a very rude awakening... My body betrayed me, my immune system shut down and suddenly "taking care of sick people" which was my job was not only impossible I had to admit  that "I" was the sick person...sure, I had said the words countless times... I rattled off the symptoms and statistics of this living nightmare to all who knew me...but all I was doing was discussing an illness from a chart...I never emotionally allowed that chart to be "mine"

Somewhere along the way my oldest dropped out of her pricey expensive private university about the time I started chemo...suddenly the roles had reversed and she was taking care of fact she was fighting her step father (my husband) for the right to care for me... I was quite honestly too sick and too depressed to care.

A part of myself died in those early months, I wasn't sure I would ever be "me" again...then I got a call from my youngest daughters school telling me her paper she wrote for English had them very concerned because she was saying she was afraid her mom might not be around to see her graduate form highschool (this was her Sr year) Talk about kicking you while you are down...BUT it was a turning point for me... I began to see that my illness was not only destroying me but my family as well...and I would be DAMMED if I was gonna let that happen after the hell I had been through the last 20 yrs to get us where we were in life... Time to put on my big girl panties and get to it... So after I worked through my emotions and went back to work I began to get a little more emotionally "better" every day...although physically I was sinking and sinking fast.

When I was given the opportunity to parent again ( I will not go into details, but my hubby and I were asked to adopt a baby) that was when I realized I had to pull myself together completely and do what was best for not only myself, my daughters, my husband, my new son, but also my future...if I didn't none of us would have a future... I was bringing them all down with me.

So ... against ever fiber of my being my Dr and I decided I could no longer work in healthcare and I went on disability (talk about humbling...try being 39 2 kids in college, 1 in diapers and knowing you are never going to be able to work again...all at the age of 39) Those were some dark days at first... I really didn't know what to do with myself on my good days and on my bad days I could not even get out of bed...HOW was I ever going to make this work...

But, I did.... because my family needs me...they need me to be the cheerleader, the peace keeper and the voice of reason when things spin out of control... I finally gave up on being "super woman" and embraced the person I was NOW...with this awful disease,,,this dragon that was destroying the life I had dreamed of...

That's just it though, I realized we ALL have dreams....but God has his OWN plans for us, and no matter how hard we fight we can't change what was meant to be.... this is who I am and this is my life... it is NOT the life I isn't the life ANY of us wanted but I have come through the storm and can see that there are GOOD thins that have come out of having this hellish disease....

I had always dreamed of being a more hands on stay at home mom, that just wan't something that was in the cards when my girls were younger...I get tat chance with my son (although it is much different than I playdates because mommy can't be in public places, I spend a LOT of time in bed, my house looks like a bomb went off in it and I am never gonna be "super woman" ever again) My daughter's now realize that if life throws you a curve ball that's OK you adjust your swing and get back in the game, my son will grow up knowing compassion for those who are "different" and the part of me that went into nursing because I felt I was "meant to help others" has not only accepted that "I" need more help than the average person, but that I can in fact STILL help others, just in a different way... I reach out to those who are newly diagnosed or are struggling to accept the "new life" they have been given. I write about the very dragon that I so desperately want to see destroyed every day... my dream in life is no longer as selfish as to revolve around me and my family... I simply dream of a cure... I KNOW that for "me" it is already to late...but perhaps my pain and my heartbreak will benefit some many more in the future...perhaps THAT IS what was my purpose in life all along...

Don't get me wrong, I still have days that I hate having this disease, I cry from frustration and pain, I cry because I realize I have "hit another milestone in my illness...only these are not "good" milestones...they are the kind you pray you will never reach. I sometimes get angry, depressed or just quiet and reflective.... because although I do see the good that has come from me being a dragon slayer I will never forget everything I have lost to my personal dragon.

Even as I sit here and type my hands are throbbing and swollen to the point I can barley bend my fingers, I am in my "daily fever spike" zone and just hit 103.2, I am covered in a pink sunburn looking rash and am counting down the minutes until daddy gets home so I can crawl into bed. I KNOW that I have to do a chemo treatment this evening, I know that I will be sick and begging to be put out of my misery... I know this's OK, I accept it as "my life" it is what it is and I can't change it but I pray SOMEDAY dragon slayers of the future will not know the life I am living, that they will never tell their aging parents that they will have to bury their daughter, sit down and plan their own funeral with their still teen aged children, never wonder if they will even see their son grow up, never have days that honestly death seems better than trying to survive another day.Never look into their husbands eyes begging him to let you die, never having to question WHY God would do this after already surviving more than any one person on this planet should have to endure...but in spite all of that.... this is MY life, I am thankful for it and I know I am a better person, better wife and bettr mom for having been forced to live this life.... I am NOT the person I was before Still's ...I miss her and the life she had...BUT, I know this is a good life too and I am better off for having had this experience because it made me the woman I am today.

   The dragon Slayer.....MOMMY!!!!

1 comment:

  1. The International Still's Disease Foundation, Inc. adopted the "Dragon" as a logo in the beginning because it signifies the daily high spiking fevers that can often be up to 105 degrees. We, as Still's patients constantly fight to see this disease in remission throughout the years, not only in our lives, but hopefully in the lives of others.
    Thank you Kimberlee for sharing your trials and tribulations with us all. The public needs to know of this rare form of RA and those that live with it gain support with your sharing and inspiration.
    Always wishing you better days though the years,
    Patricia, aka Melly
    President and AOSD patient, 35 years
    International Still's Disease Foundation, Inc.