Because it matters!

On September 20th I anxiously attended my first Scleroderma support group.  Until this year I have been completely private and quiet about my health.  I would tell about it here or there but never IN much detail.  I will be honest and say that after I had Carrington my Scleroderma has "flared" up...which lead me to where I am now.  I now see the importance of support, funds, education, and friends.  I knew I didn't want to attend by myself.  It was BYU's home game so I knew Spencer wanted to go to that and I didn't even ask if he wanted to go with me.  Plus, I don't know if he is really ready to understand and experience more than he already does with Scleroderma.  My mom has been around people with Scleroderma at national conferences so I asked her to go with me and Carrington.  I was so happy that she wanted to go without hesitation.  My sister Bailey had work off that weekend and was coming down so I asked her to go with us and she agreed.  So, we headed up bright and early.
We went to the Univeristy of Utah Hospital where a staff member directed us to the long walk to the meeting room.  There I walked in and first noticed a couple older ladies and then I turned to my left and there was a girl I knew had to be Rachel.  She is kind of like the president of the group and I met her on facebook through a mutual Scleroderma sister April Clyde.  Stacey Blackham, now Stacey Clyde is a few years older than me--we did drill together and were good family friends but her sister-in-law is April who has Scleroderma.  We have become friends over facebook but have never met prior to the meeting.  April invited me to the meeting and got me acquainted with Rachel over facebook too.  I immediately said hi to everyone then went and gave Rachel a hug.  She was in open fingered gloves and you could tell her hands hurt.  Most of the people in the room looked a lot like I had imagined.  We all have the cute little Scleroderma noses, small mouths, no lips, big teeth, tight skin, and purple fingers.  Most of them had a spouse with them.  One lady was on oxygen.  I was the youngest (I think anyways)--but Rachel may have me beat on that :)  My mom was a good one to break the ice and ask around what type they had and a little bit about them.  It was interesting to hear everyone's story, current battle, and attitude.
Honestly that's the one thing I noticed right off the bat...EVERYONE had a good attitude.  No one complained.  The cute little lady on oxygen told us about her right heart cath she had done a few days prior for monitoring pressures in her heart and the only thing negative she said was that it wasn't the funnest procedure.  Most of them mentioned about the medications they were on.  One was just starting a chemotherapy drug called Cytoxin to slow down lung involvement.  She said she was nervous but no one complained.  I learned pretty quick that God gave this horrible disease to those who can handle it!!  It was such a testimony builder to me that I was not a Scleroderma patient by chance but rather I and the rest of the patients in the room was given it by choice.  I have such a love for everyone I meet who has this disease.  Nearly all mentioned they couldn't have children.  One lady in particular never had children and was also a BYU graduate who had come from New York.  One lady I sat across from after I told my spill exclaimed, "My God...I am just amazed to hear how this disease affect everyone so differently!"  And that is the truth!
I noticed that Rachel had the exact elbows as I.  One she had a bandage over which covered an ulcer.  It was crazy how different we all were and yet so much the same.  Walking in late came April.  She is so cute and full of life.  She has one awesome attitude!!  I can't believe how amazing she is doing dispite what Scleroderma is trying to do to her after she told her story.  She is a warrior.  She is brave.  She is a wonderful role model.  I am so glad I met her and that she has befriended me!
We then watched a webinar about interstital lung disease in Scleroderma patients.  It was super informative.  It talked a lot about the medication I am on now which is a drug used to treat interstitial lung disease....which I do not have but maybe I will be lucky and not get it :)  The one lady on oxygen said she literally woke up one morning and couldn't walk all but a few feet without feeling winded.  Prior to that she would walk her dog every day.  You never know when it's going to hit but it usually hits hard when it does (at least that's what I have noticed and researched).  I think we all left the webinar feeling like each day is so precious.  That's why I try to live my good days to the fullest.  Carrington was being a little noisy during the webinar so my mom had taken her out.  Bailey all of a sudden got up and left to switch my mom.  She was gone quite a while.  Then my mom came in and sat in on the rest of the discussion.  We learned a lot from each other.
Afterwards we planned the Scleroderma Walk/Run for 2015.  EVERYONE that reads this please mark your calendar for June 13, 2015 and please participate!!  It will be held at liberty park.  More details will be made as it gets closer.  PLEASE PLEASE PLEASE come!  I can't stress enough how much it would mean to me.  I don't want you to come for "me" but I want you to come for all my friends I've met and will meet who have Scleroderma.  They need the help.  They need the support.  They need the funds for a cure.  I would love all of that too but really they need it more than I do.  Utah no longer has a chapter.  That's something I want to help change.  From what I understand of the situation, patients are having a hard time attending meetings because they have become pretty debilitated.  I am doing this for them.  I am able to go, work, volunteer on their behalf so please help me out on this! THANK YOU SO MUCH!!  I will keep you all updated :)
Anyways, after the meeting as soon as the elevator door closed Bailey started bawling.  I gave her a big hug.  My mom joined in on this group hug and said Bailey had a hard time.  She said, "Britt, I had no idea.  How do you do it?  You are my hero!"  That made me start crying which made my mom cry...so ya a tender moment we had.  My mom and I quickly realized how out of the loop Bailey was.  She was so young when I was diagnosed and didn't get to be part of my diagnosis and trial stage.  The poor girl I think was a tad overwhelmed.  So...we ate away our worries, tears, and blues at the gateway for lunch at none other than the blue lemon :)  YUM!

 This was my facebook post from that day!

What a GREAT day! I am so thankful for my mom and sister for supporting me today. Although they probably had a lot better things to do than drive up to the University of Utah and be in on a webinar about interstitial lung disease in Scleroderma patients--I am so glad they were there for me! I am excited to be the newest member of the Utah Scleroderma support group. I met 5 AMAZING women who all share a common life with me...the Scleroderma life. It was a day full of mixed emotions and lots of memories flooded me (I've made lots of walks on the bridge that takes you from Primary Children's and the U of U hospital for tests, appointments, and procedures), but I have 5 more reasons to fight for a cure because of my amazing new friends! All of us have a scary battle and I'm glad we are going to battle together! I also was able to stay and help plan the 2015 Scleroderma walk. Family and Friends....PLEASE mark your calendars for June 13th for the Scleroderma walk/run held at Liberty Park!! #scleroderma #raynauds #universityofutahhospital #teal #wearefighters

#wehavehope #wewillfindacure