From there, I found the PCD Foundation facebook page and from there, a very inspiring lady with a vision to help the PCD patient population started a private PCD facebook group called "PCD: The Good, the Bad, and Everything in Between." I cannot tell you what an incredible blessing that group is to me...I can post a question and get 10 responses within the hour and from there private messages, texts, prayers, and a ton of support. When I was in the Oro Valley ER back in February by myself, one of the PCD Mom's was messaging me reminding me of things to ask the doctor and listening when I cried. I've made so many friends that I know will be lifelong friendships. It's interesting what sharing a rare disease can do...the patient community is simply amazing.
It makes me pause and reflect on the GOOD things that have come from PCD...there has been a lot of bad and there will continue to be lots of hard days ahead because of this disease that is slowly getting worse and worse over time and will probably eventually one day take me life. However, there have been so many blessings to come about because of PCD...here is my list. :)
*My family and I are incredibly close...my Mom had to wash my hair until I was 9 or 10 because I couldn't get my ears wet and lots of sleepless nights by my hospital beds and her and Grandma and I all laugh when we mention a certain school bell they gave me to ring when I needed something after a surgery or hospitalization--details escape me but the sound of that bell does not!
*Although the journey to get diagnosed was a long 13 years, the actual trip in June of 1997 to North Carolina in Big Red with our old Lance Camper is filled with some great memories! This list item requires a sub-list:
*I was (and still am) terrified of tornados...I will never forget listening to the CB radio and overhearing a trucker say there was a tornado warning in Sierra Blanca, TX and looking at the sign on the off-ramp we were getting off to get gas at and seeing in big white letters "Sierra Blanca". My brothers, Sheldon and Justin did what brothers do best and egged me on by pointing to a mountain with a black cloud behind it while saying, "she's going to appear right over that hill...." while I hollered at Dad to skip getting gas and just get back on the freeway and drive as fast as he could....yes, I now see the fallacy in this logic and I'm glad he didn't listen to his terrified 13 year old. ;) Daddy's do know what they are doing after all.... ;)
*I don't think I'll ever forget walking into one of Dr. Knowles' labs at UNC...it literally looked like a mad-scientist laboratory....and everyone that has met him will laugh when I mention that famous ear-hair (yes, I said EAR hair!) that he dyed Carolina Blue to raise money for the PCD Foundation.
*In between the 3 full days of testing (an extra one thrown in for good measure) we took a trip to Myrtle Beach, SC. Instead of going to the Dixie Stampede like I REALLY wanted to, we went to the Nascar Cafe like Daddy wanted to--and yes 18 years later I still bring it up...although I now realize Dad actually did something he wanted to do instead of spending the countless hours pulling us to horse shows or the countless other activities we participated in over the years but I digress.
*The beach was awesome and we had a great time with our Uncle Mark who was stationed in Raleigh in the military. We have some great pictures and great memories on the beach as a family.
*As we started our trek back across country, in JUNE I might add, the infamous car trouble of road trips started. The AC went out....and because I had left the windows open in the truck and let a bird get in and scratch up the headliner...we spent the entire trip across country batting strips of headliner out of the way. And somewhere in Arkansas we stopped early cause something was wrong with the drive shaft and as always happened, Napa gave Dad the wrong part for the truck even though he always specified that the computer was usually wrong for that year for some reason....so the hours we stopped early so he could fix it were wasted and he had to break the part to get it off and then the new part didn't work so yeah....we didn't want to be anywhere near the truck during that part of the trip! Somehow (I have no idea how!) he got it to where we could at least drive to the nearest town and exchange the part and get the right one on so we could continue on home.
*We stayed at some amazing State Parks! We saw some incredible thunderstorms--another one coming through Texas on the way home that scared me and I prayed...and then I remember wondering if I really believed in God and I decided I did because I was so scared I didn't know what else to do...kinda proof of that saying, "No atheists in foxholes." ;)
*This desert girl saw what real trees and green grass looked like!
*I got to go to Japan in November of 1999 and speak at an international conference about how Effective Microorganisms (EM) had helped me in my teen years go from living on antibiotics and decongestants to nothing for years. I remember stepping out onto the stage for the rehearsal and glancing out and thinking, "I can do this...this is about the size of our high school auditorium"...and then I looked up and got real small real quick as there were balconies and LOTS more seats than I had ever imagined...but it was an amazing experience to see another country and culture for the first time which never would have happened if I hadn't had PCD.
*I've been forced to research and educate myself in a lot of different areas to be able to competently communicate with my doctors and other caregivers about what is going on and to be a better advocate for myself. God gave me a love for learning and even though I quit Nursing School so Jordan and I could get married, in a way, I've never left school because I'm always researching something and trying to better understand my body and things like vitamins/supplements/antibiotics/treatments and how they affect my body at the cellular level to try and determine the best course of action.
*I've been blessed to meet all my "PCD Pals" through the facebook group. You all are truly another family to me. I cannot imagine this journey without you now--I lived it for 28 years without all of you and in three short years you have become some of the best friends a girl could ever ask for--and an amazing resource of knowledge as we all come from such different walks of life and its neat to see how we all interact and love and respect one another as we are all at different parts of the PCD journey. From the Mom that just found out her infant's organs are on the opposite side of their body and has a disease she didn't know how to pronounce 24 hours ago to the lady that announced her 72nd birthday and encouraged all of us that a long full life IS indeed possible. We all cheer each other on when we attain our "Winning Wednesday" moments and share life through "Snapshot Saturday" and get the "Card Cavalry" when someone is in the "slammer" AKA the hospital and so much more. I love you all so much and am so incredibly grateful to God for each one of you.
*Without PCD I wouldn't see the amazing capacity Jordan has to love me so tenderly and treasure me without question...the way he stands by me through more sickness than health and the marriage we have in spite of the severe trials we have walked through the last 10 years is testament to a very special gift from God that I have been given. I will spend eternity praising God for my incredible husband and joyfully watch as he casts many crowns at Jesus feet for the way he serves me day in and day out.
*Finally, God has shown me Himself in a much deeper way than I ever would have known Him had I not been created with this disease. The God of the universe chose me to bear this burden before a watching world full of people that are suffering and need hope and angels and demons that are watching my every waking moment to see how I respond to the trials that are placed before me. It is both sobering and comforting--living life with a chronic illness is a monumental task--some days it's hard just to survive--but God equips each one of us to the task He places before us. He never promised it would be easy, but He promised to be with us each step of the way and He has surrounded us with His people from all over the world that are praying for us, encouraging us, and loving us each step of the way. God truly does "exceedingly abundantly above all we can ask or imagine." May you know His grace today!
And to all my PCD pals--I love you more than you could ever know!
For His Glory Alone,
Rachelle :)
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| Lillies I got from the store the other day...and of course I had to get orange for PCD! :) |
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