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From: http://www.scleroderma.org/site/News2?page=NewsArticle&id=8377#.WrVyY8hMFTY Monday, May 6, 2013 By: Christina Relacion “If I can help advance the word ‘scleroderma,’ I will do it in any way possible.” Head to YouTube, search for Betsy Craig’s five-minute speech at Ignite Fort Collins (Colorado) 8, and you’ll quickly learn that this woman has a roaring spirit and a dynamic personality. At the Ignite event, Betsy shared her scleroderma story with attendees, giving them a brief glimpse into her diagnosis, her journey to find a good care team and how she’s living positively today. However, a decade ago, when scleroderma wasn’t yet in her vocabulary, things were much different. In 2003, when she was just 38, Betsy started to experience black spots on her fingers, which doctors thought were gangrene. Doctors attributed it to Raynaud Phenomenon. “The pain was beyond excruciating,” she recalled. “I woke up in the night just crying out in so much pain.”…

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So it looks like March is all about waiting, preparing and practicing my faith walk through the hall way that leads to Chicago for April. Reminder of next steps: Tuesday, April 3rd We are back in Chicago and I get to acquire a PIC line for treatment. Wednesday April 4th (Day – 5) check into Prentice Women’s Hospital at Northwestern and begin the countdown to stem cell transplant with 5 days in a row of seriously nasty chemo.  The point is to get my immune system to as close to zero as possible while still leaving a small amount in case for some reason my stem cells can’t be returned to me.  (This is crazy highly unlikely) Thursday April 5 – Monday April 9 (Days – 4 to Day – 1) to get me close to zero on immune system. TRANSPLANT DAY Tuesday April 10th I get my stem cells…

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Returning to Colorado on Tuesday 2/21 was supposed to be simple and it turned out to be anything but.   That day we packed, straighten up the condo (or at least Rocky straighten up and I pointed a lot), and grabbed a car to O’hare to fly straight home.  It’s was raining and anyone from Chicago knows a little rain makes all traffic come to a stand still.  Tuesday’s driving conditions were no different.  Took a long time to get to O’hare. Once at the airport, curbside service was absolute perfection and we wandered inside to see about getting me a lift to the gate area also known as a wheelchair.   You see that airport is flippin huge and I was beat, totally beat.  It was super simple to get a wheelchair and even set one up for when we landed in a few hours in Denver.   I…

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Monday February 19, 2018 The day began at 6AM with me waking up so super excited I could hardly contain it.  I am so ready for stem cell harvest day.  So we began today the same as the last 5 days, shots to keep those stem cells hopping.   Rocky did an amazing job each day of administering the shots carefully, completely and with the most love ever!  Rocky Rocks! Then its pack and off the our new favorite Chicago location, Northwestern Medical center.  Truthfully these folks are amazing.   Top shelf care all the way. One person nicer then the next.  First its blood work to make sure all my numbers are good enough to donate my own stem cells back to me.  The ups and downs the last two weeks of all these medications have made me a science project changing white blood counts, hemoglobin, platelets, red blood cells and…

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My very first thought this morning when I woke up, still rolling around in the bed this morning was simply, Thank God I Am A Woman!  Being a woman means I get to have a monthly visitor.  I think we used to call it “our friend” (who the hell came up with that stupid name? saving for another day).  Well without going into details about my “friend” I will simply say that it prepared me for body aches out of nowhere. A slamming in my face, take my breath away ache.  On the upside, cause you know I always have an upside, I have had experience handling the discomfort, pain and knowing that this too shall pass just like most women walking the face of the earth. My extra little pop quiz in life has been the bonus of this disease called Scleroderma.  My long (almost 14 years) history with…

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Today was a good day.  A really good day. It began with the shots Rocky has to give me each morning to help my body increase stem cells to prepare for harvest.  Its a powerful drug set out to do some magic in my body that will eventually work to my advantage. You see in order for me to become my own stem cell donor I have to be able to harvest at least 2 million stem cells. That’s the final part to this Step 1/Phase 1 of 2 called the Harvest. So I do whatever they tell me, I try to stay positive and live in gratitude.   Until then we wait.  We had to walk a block to get a couple of pedicures and a little “me time” this morning.  We think it was well over due. Its Valentines day and thinking back to how my heart is…

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So as I try to figure out how to put into words what is happening now I am searching for the right words.  The words that are wrapped in gratitude.  The ones that don’t make me sound like a victim.  I had the wonderful pleasure of having my daughter come visit and spend time with her.  Always saying goodbye is hard.  This time was so much harder. Can’t wait to see her again. In the mean time I can’t get my fever under control.  It spikes, then Tylenol brings it down then I feel like a hostage because I wonder if grabbing a burger at Shake Shack is what caused the fever….I want to tell the docs all about it (and I have just waiting for their next steps while I type this)  but there is a HUGE fear that they will tell me that to have problems this early…

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Yesterday, Friday 2/9/18, during a serious Chicago snow storm, we headed to the amazing hospital to begin the real work of Step 1. The first part is mobilization thanks to a huge dose of chemo.  Most of the morning was spent getting me set up, checked in and on board with a working IV to give me the medications my body needs to fight this horrible disease.  A stem cell transplant is such a new protocol and seen as a true miracle and beyond my wildest dream in the past.   There are meds to counter act other meds, meds to keep certain symptoms at bay then then there is the true poison, Chemo. Loved Nurse Emma and NP Amy who made this entire process so much less scary, talked me through everything, answered every single question we had and just were simply top shelf. I have been on chemo…

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