My Cranky-Panky Friends

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.  For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed it for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.” 2 Corinthians 1:3-7
“We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death.  But this happened that we might not rely on ourselves but on God, who raises the dead.  He has delivered us from such a deadly peril, and he will deliver us.  On him we have set our hope that he will continue to deliver us, as you help us by your prayers.  Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.”  2 Corinthians 1:8-11


     When I realized I had Chronic Pancreatitis, I began to look online for other people who were suffering with this disease.  It can be a very lonely place to be, since it is rare that you run across anyone who is also struggling with pancreas issues.  I discovered several support groups on Facebook for people with Chronic Pancreatitis.  I quickly learned I wasn’t alone and there were people who actually were living through the same thing as me.  
      It was through these support groups,  I learned about the different treatment options including the TP/AIT.  I remember when I first learned about "The Surgery" I was like….”What? I thought you couldn’t live without your pancreas”? You would be surprised at how many doctors don’t even know that you can live without your pancreas.  And yet, there were people in these groups who were doing just that.   I learned that I wasn’t the only one that the other treatment options didn’t work for….in fact, I would say most people do not get lasting relief from any of the other options.  I learned about so many people who were on feeding tubes and in the hospital for months at a time…..then out…..only to be right back in.  I remember thinking….well, I’m not as bad as them.  Maybe I will be able to control mine.  After reading about the TP/AIT….I had said to myself and out loud….I will have to be on my death bed before I will consider that. I am a long way off.  Even though I had been told that they have discovered it is better to do the surgery early on in the disease, I still couldn’t even consider it.  I couldn’t justify having such a massive surgery that was going to give me another set of problems, when I was able to function on a "good day."  Of course, my level of functioning and what is a normal level of functioning are two different things.  I thought that maybe my disease wouldn’t progress….maybe it would just stay at the stage it was in ……  I could handle the hospital stays 3 or 4 times a year.  And in between those, I would just quit eating or drinking anything for a few days each month to keep things under control.  I guess you could say I was in denial. 
     But, it did start to progress.  The attacks started coming closer and closer together. And, the intensity of the attacks became greater and greater.  The relief  I was able to get was less and less.  It was a scary thing when I was at the hospital, and they were looking at me and saying…”I’m sorry, we have given you all we can”….and yet, I was still vomiting and still in pain.  That was when I begin to realize, it’s time.  Early on , I remember asking a friend in one of the groups ,“how do you know when it’s time to do the surgery?”  Her response was : “You just know.”  When you are laying in your bed at home, with an IV in your arm, not eating, not drinking, not living and no hope of  getting better, you know, it’s time.  She was right. I am thankful that God still continues to confirm that He believes it’s time. 
     I am thankful to the people in these groups who I now call friends. They are willing to share their struggles and their lives.  This gives me and others hope.  These people are kind of like a family. These are  some of the people I have met: Jill ~ she is passionate about getting knowledge and power to people suffering with this disease~she fought for her own life and now she is helping to fight for the lives of others by starting a foundation called The Pancreas Project. It will  bring awareness and knowledge to the medical community and public as well as emotional and financial support to those who suffer ;  Angie~ she is knowledgeable and caring and shares with so many others…..she fought for her own life while her husband was in Afghanistan fighting for your life; Laura and Felicia ~fight for their lives everyday living alone yet still reaching out to help others ~ Felicia makes beautiful pancreatic disease awareness jewelry;   Whitney~ a beautiful young girl, with a spirit for living and fights to bring awareness by speaking out in the midst of her own battle;  a mother who’s 5 year old child is  fighting this disease  ~ who comes to hear from others what her daughter is going through since her daughter isn’t able to explain it to her;  a mother / wife who’s husband and 2 young children all are battling this disease - she shares her experiences and knowledge with other mothers;  Karen ~a nurse and who’s husband fought this disease -she gave me as well as others much hope in UAB and Dr. Christein;  Kristy ~ who is trying to regain her health/life while still providing hope to me and others;  Erin~ who started a group to encourage people who have had the surgery to share their stories; Bruce ~ who is fighting for his life while fighting to get financial help for the surgery since medicare/medicaid  won’t cover it;  Carrie~ who gives great advice on natural ways to deal with symptoms; Michelle ~ who made beautiful pancreas pillows for everyone to help with the pain in between her hospital stays;  Sue, Megan, Debbie, Candice, Serenity, Sara, Keri,  Wendie, Christy, Beth, Sandy, Heather, Rob, Michael, Chris, Anna, Tracy, Betsy, Stephanie, Evelyn, James, John, Kristin,  Amanda, Hope and many many more.  These are real people, living real lives with this disease from across the world.  They live in the England, Australia, Ireland, Canada, Serbia as well as throughout the many states of America and many other places I dream of going. I now have friends throughout the world…..how cool is that! :-)  Their stories and knowledge have more impact on me then anything I can learn from reading out of a book or hearing from a doctor.  
     I am grateful to them for using their sufferings to help others who are suffering. I am grateful to them that they are sharing their hope with those who can find no hope.  I am grateful to them for humbling themselves and sharing their hurts, fears and love.  They are living out what Paul describes in 2 Corinthians.  They are comforting others just as they themselves have been comforted.  We know that  by relying on and putting our hope in God , He will deliver us from what seems to be more then we can endure.  And you, my sweet friends and family,  are living out Paul’s words as well, when you help us by your prayers.  And how awesome it will be, when many are giving thanks for the gracious favor granted us in answer to the prayers of many.   Love to everyone! Hug someone today, even if they are grumpy like me! :-)