Thursday, July 19, 2012

Freedom

“….I DO BELIEVE, HELP ME OVERCOME MY UNBELIEF.” MARK 9:24

 My pancreas is gone…..and God has given me a free heart in it’s place.  I’ve been searching for that freedom for quite some time.  I probably should say a heart that’s more free….because my mind won’t allow me to live totally free…..doubt, guilt, hurt, worry….they all like to creep in at times and try to steal the freedom that my heart knows has been given to me…..but, because the Prince of Peace lives there, they don’t get to stay……He guards that space, the space that belongs to Him and keeps them from staying too long…..He allows them there just long enough to remind them that they have no place in my spirit and then sends them on their way.  Sometimes I argue with Him about those uninvited guest…..I use words like  “but”,  "what if”, "are you sure”……I know He must get tired of dancing the same dance to the same song with me.  But, thankfully He never acts like it if He does. It’s almost like that’s His favorite song and looks forward to me asking Him to dance. It’s our song. It’s our dance.

The freedom is freedom from judgement, blame, doubt, shame and pride. A chronic illness brings with it all those things…..God brings freedom.  I could have accepted that freedom long before my pancreas was gone……I accepted the freedom for my soul…..but, I couldn’t accept the freedom for my heart.  What lies within me is such a sensitive, vulnerable and guarded heart that I couldn’t accept that it was ok for others to doubt me…..to judge me….to blame me.  My pride made me try to be tough….and try to appear stronger then I really was…..to try to act like I was ok even when I wasn’t.

Through this journey, God is showing me that relying on others isn’t a burden….it is a gift. It allows others to be a blessing and receive the joy that comes along with giving of themselves.
As I was trying to think of ways to give back to everyone that helped me during this trial, my dearest friend reminded me of this… she said, “ Paula, you don’t pay it back, you pay it forward.  Just let others care for you.”  I don’t know why that is so hard for me….it’s the thing I want the most….to be loved. And I know I am…..I know I am…..I know I am….. I know I am because I was still loved when I was very unlovable. Why is it still so hard for me to believe?



Thursday, April 19, 2012

Thank You!

“Never will I leave you. Never will I forsake you.”  Hebrews 13:5


Well…..it’s been 21 days since my surgery.  It  feels much longer.  Every minute that went by felt like an eternity.  I am still processing all of this ordeal….and let me say, it has been an ordeal.  Not just for me, but for my friends and family as well.  And, that’s with everything going really well!  God knew all to well that I wouldn’t be able to handle any complications, so He took care of that for me….Thank you so much God. :-) I love you so much for that.

I havent’ written much on any of this 1.  because I have been just trying so hard to recover and survive.  2. I want time to reflect and sort all this out……I want what I share to to be first of all, REAL and True and also,  be what needs to be shared for the benefit of someone else…..not just a time for me to groan, complain and cry…..and that’s mostly what it would be right now. ;-)

I do want to tell y’all how awesome all of you, my friends and family are!  Your prayers and LOVE did not go unnoticed even though it may seem like it ……I am truly blessed to have so many people praying for me and caring for me.  I will say this is not a surgery you can tough out on your own…..you would never make it.   My mom, dad, sisters, John Parvin, and  Butch have been so great for putting up with me ~ sitting with me, listening to me cry and taking care of me; Julie and Kory have poured out their gifts to make sure I was taken care of in so many ways…..many family, cousins and friends came and sent things to UAB to let me know I wasn’t alone….My sister’s childhood best friend, Kim and her family sat with us and gave us much moral support…… Gracie(one of my sweet college girls) spent my last night in the hospital with me…..walking the halls at midnight in a full moon reassuring me with my own words of why I did this surgery as I cried;  and once I got home we have been flooded with delicious dinners almost every night from all of you…….and you all still continue to give one of the most precious gifts …..the gift of your prayers.  I have read every encouraging word and prayer and it never ceases to amaze me how your sweet words lift my spirit.

At some point I hope to write a little more detail on this experience.  I’m not ready to do that right now.  I just wanted all of y’all to know how much I appreciate all you’ve done for me and my family……how much I love you all and feel so blessed to have you all care about me.  I am so thankful God never left my side and sent you all to remind me of that.  Much love to everyone.  Big Hugs to you all.

Wednesday, March 28, 2012

Short and sweet tonight…..:-)

Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight.” Proverbs 3:5-6


So, tonight is the last night I will sleep in my own bed (with a pancreas)…that seems so strange.  Just a couple months ago, I thought I was years away from being ready to do this surgery.  And here I am, less then 34 hours until I will be in surgery having my digestive system completely rearranged by someone I’ve only met once.  If he was the one I had placed my hope in…..if I was going completely on his opinion, I would be a lot more nervous right now.  But, because I strongly believe that God is the one who has laid out this path for me, I will sleep a little easier tonight.  I pray that Dr. Christein is sleeping well tonight and tomorrow as well.
 Please pray that this sinus infection I have is a lot better in the morning.  It is so frustrating and annoying dealing with this on top of trying to prepare for this surgery.  According to the nurse, as long as I’m not running a fever, I will still be good to go on Friday.  But, I sure would like to be free from one less thing that makes me uncomfortable.  Pray that John Parvin continues to get better too, and that Butch doesn’t get whatever it is that we started out with……..I really need him so much right now.  Just his presence is a comfort to me.
  We will go down to B’ham tomorrow and stay at the Marriott that is attached to the hospital.  I will not be able to eat anything after breakfast and will be able to have clear liquids until midnight.  I will also have to do a cleanse (fun, fun!) . So, I’m sure Butch, John Parvin and my mom will need extra patience with me….please say some prayers for them.  In general, right now, I am relying on y’all to do most of my 'praying out loud.'  I know God hears the silent prayers of my heart. But, right now, dwelling on anything makes my mind go in too many directions….and many places my mind tries to go that I just don’t have the energy to think about.   So, my sweet friends, I have asked Him to hear your prayers on my behalf as well as those silent prayers of my heart.
   I don’t have an official time yet for my surgery.  They will call sometime tomorrow to let me know. As of right now, I am the only one on the schedule and the nurse said that if it stays that way, I will probably need to be there around 5:00am. …the sooner they get me in there and knocked out the better as far a I’m concerned.  Love to everyone!

Monday, March 19, 2012

Driving through Life………..

“Be assured that from the first day we heard of you, we haven’t stopped praying for you, asking God to give you wise minds and spirits attuned to His will, and so acquire a thorough understanding of the ways in which God works. We pray that you’ll live well for the Master, making Him proud of you as you work hard in His orchard. As you learn more and more how God works, you will learn how to do your work. We pray that you’ll have the strength to stick it out over the long haul~not the grim strength of gritting your teeth but the glory~strength God gives. It is strength that endures the unendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that He has for us.”
Colossians 1:9-12                     
                                                                                                                      
    The other morning, I realized I forgot to go to the store and was out of coffee……not good! It’s the one vice I have let myself keep in all the things I’ve had to give up.  Instead of having to get dressed, appropriately ;-), I decided to go to a drive thru.  As I ordered, the guy accidentally hit two buttons at once and added on something I didn’t order.  He noticed right away, apologized and asked me to wait a second while he corrected the mistake.  I waited and waited for what seemed like forever.  Once he had corrected the mistake, he apologized for my wait….I pulled up…..and he again, apologized and said how sorry he was that I had to wait "so long".  As he was rushing around getting orders, taking care of business….I started thinking about how long it took. I realized it probably had taken less then one minute for him to correct that mistake…..less then one minute.  As I thought back, I realized I had started to get a little irritated. Although the guy didn’t know this, he still felt the need to profusely apologize for that "less then one minute" I had to wait.  Does anything sound wrong here to you? Something wasn’t  right! And it wasn’t with him…..it was with me.
     One thing this disease has definitely made me aware of is what it means to be patient…..or long-suffering.  And, yet…..the patience I’ve needed to develop to endure this suffering is nothing compared to the patience that other people in this world have needed to endure their hardships.  I think of those who are literally starving, tortured, losing family member after family member….and I am truly humbled.  Everything is perspective and experience.  And, although I have been patient and long-suffering with this disease…..many years of trying to figure out what was wrong……it is in the smallest of things that my patience is tried.  We all have those moments ….the moment the light turns green and the car in front of us just sits there…..the moment you go to check out at Walmart and both of the two registers open are full…..the moment you go to the bank and the only line that’s open is for “commercial customers” only…..the moment you ask your child to take the garbage out and he says “next commercial"…..the moment you ask your husband to take the dog out and he says, “ after this shot.” 
    So, we practice our patience all through the day and then we pull up in the drive thru….where in our perspestive…..in our experience……in our view…..we shouldn’t have to wait.  And when we do, someone needs to pay for that….either literally or by profusely apologizing.  Not only are they apologizing for our having to wait in their line….. but, in a way, they are  “paying” for the waiting we have had to do with everyone else that day.
     I knew once I got the date for my surgery, the waiting for the day to come would be difficult.  I over analyze everything and with too much time….I can really drive myself nuts…..and everyone else around me too. :-)  I’ve tried keeping my mind occupied with other things while I am waiting……  reading, writing, making jewelry ;-)……and practicing my patience.  One definition states that patience is the ability to calmly endure pain, hardships, difficulties and annoyances.  I know that without God’s Spirit within me, I would not be capable of having any patience with this disease or anything else.  Thankfully, patience is one of the gifts we are given when we receive His Spirit within us……it is one of His fruits that He develops in us.  It doesn’t happen automatically. It happens has we are tested and grow in Him and His Spirit.  I love the way The Message interrupts and describes the fruits of His Spirit. In Galatians 5:22-24  Paul states: "But what happens when we live God’s way? He brings gifts into our lives, much the same way that fruit appears in an orchard ~ things like affection for others (loving), exuberance about life (joy), serenity (peace). We develop a willingness to stick with things (patience), a sense of compassion in the heart (kindness), and a conviction that a basic holiness permeates things and people (goodness). We find ourselves involved in loyal commitments (faithfulness), not needing to force our way in life (gentleness), able to marshal and direct our energies wisely (self-control).  Legalism is helpless in bringing this about; it only gets in the way. Among those who belong to Christ, everything connected with getting our own way and mindlessly responding to what everyone else calls necessities is killed off for good ~ crucified."
  When I was in the line having to wait, I begin reacting in a way that most people react ….irritated and annoyed.  But, because God has been developing His fruit of patience in me, God’s Spirit reminded me to have His patience and kindness.  He gave me self-control and allowed me to react with love and gentleness to the guy who was working so hard. And when I left, I had a peace because I had reacted in God’s way.  I was only able to do that because He made me mindful of these things….not of my own will or power.  I  know that by developing these fruits in me in the little things in life, God is preparing me for the bigger circumstances I will face.  He is giving me these gifts in order that I may have peace and honor Him.  He is giving me His perspective.  He is giving me His ways.  I know that I am not perfect nor ever will be…..and many times, I react in ways that might feel good at the moment, but makes me and everyone else feel worse later on….that is why I am so thankful that God IS always patient, loving, kind and good.  I am thankful that He responds to my imperfections with gentleness and peace.  I am thankful that He makes me mindful of His ways.  Without Him, I would just be another jerk in the drive thru line giving people who are trying to make it in this life, a peace of my mind because they denied me of my rights….after all, he took away “less then one minute” of my life…..GEEZ.  ;-)  Give someone a break today…..smile and say thank you, no matter how long it takes!  You both will feel better!  Much Love! 

Friday, March 9, 2012

Washing of Feet………..


“Jesus knew that the Father had put all things under his power, and that he had come from God; so he got up from the meal, took off his outer clothing, and wrapped a towel around his waist. After that, he poured water into a basin and began to wash his disciples’ feet, drying them with the towel that was wrapped around him.” John 13:3-5

     I went to get a pedicure today.  Before I ever got in the chair, the girl wanted to know if I wanted my eyebrows waxed.  I said no, not today. What she should of said was what she ultimately meant….you NEED your eyebrows waxed. LOL:-)  So, I left with eyebrows that looked sunburned before it was all said and done.  Being tortured wasn’t my goal when I walked in….
     Anyone who knows me, knows I like to be pampered. I’ve been like that since I was a little girl.  It is so comforting to me to have the least little touch ~ my hair brushed, my back rubbed, my hands manicured, facials…..really most anything.  But, to have my feet washed, massaged and manicured is truly something that brings me much relaxation and relief from discomfort.  And, while I have been sick, it has allowed me to escape some of the pain and sickness I am feeling even if it is just for that little while.  
     I don’t know about you, but having someone wash your feet is a very humbling and intimate moment. There is something about showing someone my feet that makes me feel vulnerable.  And yet, when they begin the washing, I become completely at ease.  Today, my experience was a little different.  One that left me feeling even more humbled.  One that left me feeling as though I  saw the inside of someone’s heart.  One that left me feeling more loved, blessed and amazed at God’s love for me.  You may be thinking…really?  all this while getting a pedicure?  come on, you’re laying it on a little thick.  But, I promise you, I truly felt all of those things while sitting in that chair, having my feet washed, and listening to this man’s heart and soul.   He had no idea how much he was touching me…..he was just sharing who he was, things he had learned …..things that God knew would touch me.  
     I am trying to remember the first comment that he made when I realized he was a sensitive soul.  It was early on in our conversation….I specifically remember thinking those exact words…that he has a sensitive soul.  I can’t remember his words, but it was a fairly simple comment.  As our conversation continued, all of what he shared and how he shared it continued to confirm his sensitivity. He started telling me about a client he had when he lived in Arizona.  He talked about how she was an amazing women….she was 67….lived on a ranch, road horses, bread award winning German Shepherds and road a Harley…..:-) He talked about how she wanted to give him one of the puppies. He said he loves dogs and would have loved one. He knew what a loving gesture that was on her part….but, it wouldn’t be fair to the dog.  He is always working…..it wouldn’t get the proper care it needed.  He talked about a dog he had that passed…..how he loved his terrier mix.  Once that dog died, he couldn’t bring himself to have another. The dog saved him once from drowning.  His eyes became teary.  He continued talking of Ms.Arizona…..how she said her dogs were all she needed now. She had been divorced twice and she was done with marriage.  He said she told him no offense to him, being a man and all.  :-) She didn’t think all men were like that, but she was done.  He said he told her….".you had a cross to carry twice….why do you still carry that cross around?  You carried it up a hill, now put it down.”  His words were soft and gentle.  
     Our conversation drifted here and there.  Sometimes with silence as he was washing my feet.  I don’t remember how the conversation started back up….but, he begin to tell me about his dad who had lived in Arizona.  He told me that he died with Pancreatic Cancer. My heart sank.  I told him that I suffered with a pancreatic disease….not cancer, but, something that is difficult to treat.  I told him that I would be having my pancreas removed.  He told me I was lucky.  He shared how quickly his father became ill….how he was in so much pain.  He told me how every night when leaving work, he would say….I have to go home….I have a very special client whose feet I must massage. …every night, he would rub his father’s feet to relieve his pain while his brother would rub his back.  He told me how his father called all of the children in as well as his mother ~ he said his father’s eyes "became wet"….he wanted to tell them goodbye.  He began to rub my feet the way that he would rub his father’s feet….showing me the pressure points that help relieve pain. As he continued to talk about his father, his eyes "became wet”.  He told me about how another client, not long after his dad had passed, gave him a book. The book he said made him happy for his father…..made him see things differently.  What book?…..The Shack.  He said the lady didn’t want the book back…..she just wanted him to pass it on to someone else……he was the sixth person it had been passed to…..he passed it to the seventh.  He told me how every night before they would go to bed, his mother would gather everyone around the living room, and they would all pray together.  He said those things are what matters.  He said he knows money is very important, but some people forget…..think too much about money.  That reminded him of his time in Key West……..no one is in a hurry ….people are so kind…..so laid back. He said I would love it there….I guess he picked up on a few things about me too. :-)  I asked where is mother was now.  He said still in Arizona.  He said he wanted to stay with her after his father passed, but, his mother encouraged him to leave….. to get out and learn……experience things.   And then, the silence came again…..as he seemed to be lost in his thoughts…..as I was lost in all that he had just shared.   
      Wow….I got a lot more then I bargained for when I walked into that place. I had no idea that I would experience the inside of someone’s heart….that I would see someone’s soul…..that I would be touched by this man’s spirit.  I had no idea that God was planning to reach down at that very moment in time in that place to say….Hey I’m still here…….never will I leave you.  I had no idea that while my feet were being washed, my eyes would also "become wet.”  And, just as I walked in ~I walked out…knowing that something powerful had just occurred but not knowing how deeply until I was alone…….alone with God.
     “You do not realize now what I am doing, but later you will understand.” John 13:7
     “ When He had finished washing their feet, he put on his clothes and returned to his place. ‘Do you understand what I have done for you?’ He asked them. ‘ You call me  Teacher and Lord, and rightly so, for that is what I am. Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet.  I have set you an example that you should do as I have done for you.  I tell you the truth, no servant is greater than his master, nor is a messenger greater than the one who sent him. Now that you know these things, you will be blessed if you do them.”  John 13:12-17
    This Sensitive Soul was literally washing my feet.  But, more importantly, He was washing away my doubts….my fears.   Just before I left to get that pedicure, I had become upset and fearful about the issues that would come with doing the surgery.  I was letting doubt set in once again.  But, once again, God was right there….reminding me of who He is….reminding me that He is here with me.  I begin to remember that if I didn’t have the surgery that I would live in constant pain and sickness….that I would probably develop diabetes as the disease progressed…..that I had a 50%  increase of getting Pancreatic Cancer.   My time with this Sweet Soul reminded me of how awesome and powerful God is….that He is faithful, loving, and above all else, the one in control.   I made the statement that I wish someone would wash my feet every night the way Sweet Sensitive Soul did for his dad.  He said, if someone loves you enough they can and will do anything.  He was right…..God loved me enough to be the one there washing my feet today.  I can’t imagine anything being more sweet then that.  I pray that God will bathe that sweet man’s spirit in His peace and comfort…..just as He used him to do for me.  I know that there will come a time that God will say to me the words that Sweet Sensitive Soul said to Ms. Arizona….."Why do you still carry that cross around…..you carried it up a hill…..now put it down.”   
      

Sunday, March 4, 2012

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! :-)









Thursday, March 1, 2012

My first trip to UAB

          “Greater love has no one than this, that he lay down his life for his friends.” John 15:13
  
     Julie, Butch and I spent Tuesday night in Birmingham since I had to be at my at my appointment for my CT Scan at 7:15am on Wednesday.  It was so nice to have both of them with me.  Julie keeps us laughing and since she has been my dearest friend since I was 10, there isn’t anything she doesn’t know about me.  There is nothing like having that kind of friend.  I don’t have to explain anything….she just knows.  We have this thing, where we can just look at each other, and understand.  It is truly a priceless gift…..a childhood friend.  Butch treated us to Ruth Chris’…..I can’t wait until I can truly enjoy a meal like that again.  But, just being there together with them was so enjoyable and comforting. 
      I appreciate so much the fact that Julie and Butch got up at the crack of dawn with me.  They were so sweet …..Julie wouldn’t let them have a diet coke until I went back for my CT Scan since I couldn’t have anything. LOL;-)  I told them it really didn’t bother me……but she insisted.  She was so happy once they called me back! HeHeHe! :-) Everything went fine with the scan…and so we went up to the 5th floor of the Kirklin Clinic for my 8:30 appointment with Dr. Christein.  His residence came in an discussed things first.  I explained everything the best I could to her….answered her questions.  It wasn’t until later, I realized that was really just for her….not me, she was playing doctor. LOL :-)
      Dr. Christein came in…..I have heard from most everyone that has dealt with him that he has a very arrogant, cocky attitude.  But, that he is a great surgeon and that I wouldn’t want anyone else doing this surgery.  My first impression of him was more that  he is very confidante. I am happy about this….you want someone that is about to cut your insides out really confidante that he knows what he’s doing! LOL!  He explained that he talked with Dr. Ferrante about me for a long time.  He said they both feel that I would benefit greatly from this surgery.  He said that although some people benefit from having only part of the pancreas removed, I need the entire pancreas removed because my pancreas is diseased throughout.  He gave us the details of how he removes the pancreas, the spleen, part of the stomach and duodenum and then how he will reconnect everything.  He explained that he anticipates that I will be in ICU for 2 days and that I will have a total of 8 to 9 days in the hospital. I am a little confused on just how long the surgery will actually take.  I think he said a total of 5 hours.  But, everyone I have spoken to that has had this surgery, said their surgery was at least about 10 hours.  Either way, it won’t matter to me….I won’t know. :-) But, I just want my family and friends to know so they aren’t concerned the longer it takes.  He said that I will be able to come home once I leave the hospital.  You usually have to stay really close to the hospital the first couple of weeks to a month…but, we live close enough, so that’s great! He went over all the risk involved with the surgery.  One of the biggest risk is bleeding because they will have to give me blood thinners so that the islet cells do not develop blood clots.  He doesn’t anticipate this to be a problem, but just wants me to know that there is the chance I would need a blood transfusion.  Once I come home, he said I am going to be really sick and fatigued! DUH! He said I won’t feel like eating for quite sometime.  But, I should improve greatly over the course of 4 to 6 weeks. He said the fatigue is going to be one of the biggest issues since I have been sick for so long…it will take time for my body to fully recover from this.  I will be on insulin for sure for the first 2 months at least.  This is to allow the islet cells to rest and become adjusted and rooted in the liver.  20% of people are eventually able to come off insulin completely; which means, 80% of people need insulin.  Of that 80%, a large percentage of people only need one or two shots of insulin a day.  He thinks that I will fall into that category.  Butch asked once I have recovered will I be able to eat a normal diet?  He said yes, that I will have no restrictions. :-)  Of course, I realize in order to manage the diabetes my diet will be important…..also, I know a lot of people that digestion can be an issue as well.  But, I was so encouraged and feel like I will actually be living again. 
  After we discussed everything, and he had answered all my questions (which included whether or not he could give me a tummy tuck since he was cutting my stomach open anyway ;-) he smiled and said no. Darn it!)  …..he got his calendar to decide on a date.  He  first said he could do it this Monday……and of course, my heart sank…..:-) But, then he realized that he would be going out of town 2 days later.  Not a good idea.  He looked at the next week, and again, he would be leaving about 4 days later. He was ok with that….I wasn’t.  I want him around for my entire hospital stay!  So, it is scheduled for March 26th.  They went ahead with pre-op stuff while I was there which was great. I was given some shots ( meningitis, pneumonia, and two others I can’t remember); answered some questionnaires; went to anesthesiology where they went over my history and did an EKG; and then went to the lab and had about 10 vials of blood drawn.  There was a lot of waiting in between each of these things so I am so thankful to Butch and Julie for sitting through all of that. We were all ready to get the heck out of there once it was all over.   


    Dr. Christein said that UAB has done the second most TP/AITs.  There may be some debate among the other centers that do this surgery with his statement.  It seems they each want to be the leading hospital and have the best stats. Either way, Dr. Christein has done around 90 of these surgeries.  In the world, there are only about 1000 that have been performed although that number is obviously continuing to increase.  Dr. Christein has never had anyone pass from the surgery and only 2 have needed to go back into surgery due to complications.   Life expectancy for someone who has had this surgery is expected to be normal.  The quality of my life, is hopefully going to be greatly increased! :-)
     Some things that I will be praying about are: 1.  That the quality and quantity of islet cells they are able to harvest will be really good ~ this will determine the outcome of my diabetes 2. there will be no complications and no bleeding 3.  that my nausea will be well controlled! I am very concerned about this……I’m allergic to so many nausea medications….and get nauseated easily.  4. that my pain will be well controlled 5. that my family will have peace and the time will just fly by for them
  Hope all is well with everyone! Thank you for your concern, support and love! I love y’all! 

Tuesday, February 28, 2012

Divine Appointment in the ER


"FOR I KNOW THE PLANS I HAVE FOR YOU, 'DECLARES THE LORD', PLANS TO PROSPER YOU, NOT TO HARM YOU, PLANS TO GIVE YOU HOPE AND A FUTURE."
                                                                                                                    JEREMIAH 29:11



      It's 3:12am, I am having a hard time sleeping.  So, I thought I would share one of the God moments I had last week.  I had gone to the ER with my mom because she wasn't feeling well.  We were concerned because she was having some stroke-like symptoms and since she has had a mini stroke in the past, we felt it was important that we get this checked out fairly quickly.  Thankfully, the tests showed that she wasn't having a stroke and we were able to come home later that day. Please pray for her too, as I know the stress of all of this with me is taking a toll on her. 

    While we were there, across the hall from her was a man.  His wife/girlfriend was with him.  I couldn't help but over hear a little of what was going on with him, and I told Melanie, I think they said something about pancreatitis.  She, laughed thinking I just had pancreatitis on the brain. :-) Of course, I do.....but that's beside the point. :-)  The man was talking loudly and I could see directly into his room from where I was sitting.  His wife could also see me, and she continued to look up at me and smile.  Whenever they were discussing things,  she would look up at me as if she was including me in the conversation.  I continued to hear comments, that would relate to someone who had pancreatitis.  Each time, I would hit Melanie, and say see.....that goes along with pancreatitis! :-) She just laughed at me, but then began to agree it did seem that way.  I knew the nurse wouldn't be allowed to tell me what was up with him, so I told her, I have pancreatitis and if that man has it to, you can let him know that I would be glad to talk to him.....I told her we need all the support we can get! :-)  She just smiled and of course, said, I can't discuss other patients.  Let me say, the man obviously didn't care who in the hospital knew what was going on with him.....he was talking VERY loudly and didn't care that his door was wide open.  So, it's not like I was having to be nosey to find this out.  I would always want to respect someone's privacy as I am fairly private myself.  

     Well, y'all know me.....I felt God prompting me to say something to him, but I was scared.  I didn't know how to approach them, what to say.....I didn't know if he would scream at me and tell me to get out.  And, I was afraid the nurse would say, " Miss, would you please stop bothering other patients!" LOL ;-) But, I knew I had to say something....I couldn't let this opportunity to pass by.  So, I walked across the hall and stood at the door.  I timidly told them that I couldn't help but over hear and asked if he had pancreatitis.  He said yes.......and I immediately said, " I do too."  I could see the disbelief on his face as he said "Really?!"  I said yes and assured him I knew the pain and how difficult it was to deal with and understood what he was going through.  He immediately started telling me his story, showing me his scar where they had previously removed a cyst from his pancreas, (I told you he didn't care. ;-))  and his wife started asking me questions.  He was very open about admitting that he drank A LOT of  alcohol on a daily basis ( 15 to 16 beers a day) and that he couldn't stop and probably wouldn't.  He said that he had tried and would be able to for about 4 or 5 months but start again.  I quickly wanted him to know that I did not judge him for that and understood his difficulty.  

     I would like to explain something about alcohol and pancreatitis.  Many people believe the main reason for Chronic Pancreatitis is alcohol.  Health care professionals who are uneducated about CP have the tendency to label any CP patient they see as an alcoholic.  However, there are MANY reasons for CP. It is my belief, (along with many others in the support groups I am a part of  as well as specialists in the field)  that alcohol and smoking only aggravate an already existing condition.  My CP was caused by a birth defect, Pancreatic Divisum, and the procedures that were required to try to correct and help the symptoms of this birth defect. (There are many people in the my groups that have Pancreatic Divisum as well.)   In addition, there is Hereditary Pancreatitis and AutoImmune Pancreatitis. ( There is one lady in the group who's entire family has it.....her husband and two small children. I cannot imagine the pain of  watching your child with this.)   Cystic Fibrosis and injury can also lead to Chronic Pancreatitis. There are people and children who have never had a drop of alcohol that have Chronic Pancreatitis.  And then sometimes,  it is idiopathic pancreatitis, meaning there isn't a known cause.  I'm sure we can all think of people we know, that should have Chronic Pancreatitis if alcohol was the main cause.  And yet, I bet you don't know many other people, if any at all,  who have it besides me.  This is a misconception that I would like to help correct, because I have seen how it has torn a part the lives of some of these people.  It continues the stigma attached to CP which makes getting caring, proper treatment difficult.  Having said this, once you do know that you have pancreatitis, it is very important to stop drinking any alcohol even moderately.  It definitely aggravates the symptoms and,  if you don't stop drinking,  then it will only cause more problems.

     This is a problem for the guy at the hospital.  He and his wife wanted advice......wanted to know what I was doing.  I told them that I was going to see about the TP/AIT at UAB.  And they wanted to know if I thought he could benefit from that.  I told them I didn't know.....but, I had to be honest with them.  So, as gently as I could.....as lovingly as I could, I explained how it would be very difficult to get any good results unless he was able to quit drinking.  He surprisingly was not hostile or angry when I said this.  I explained to him basically what I just said in the above paragraph.  But stressed that it would be difficult to get better if he didn't stop drinking.  He explained how his entire family was alcoholics and drug addicts....and yet, he was the only one with this disease.  My heart felt for him.....  and for her.  Once when he had gone for a test, she came over to talk with me, and said they told him he was going to die if he didn't stop drinking.  But,  drinking was the only thing that made him happy and he said if he dies, at least he would die happy.  Throughout the day, we would talk a little here and there.......it became very clear that it was a very dysfunctional relationship and he was very mean to her.  

     The whole situation made me very sad.  I didn't have any advice for them. I felt his self- hatred ......I'm sure he blames himself.  He was very open to the nurses about his drinking and confessed it with such humility.  And he was nice to them and to me, yet very hostile and mean to his wife.  He even kicked her out  as well as his father.  I think they eventually left him there.....which I don't blame them. Had I seen all of this before I went over, I would have been too fearful to say anything.  It is amazing that he didn't react in anger to me.......I know it is because it wasn't from me but from Him.   

      I'm not sure why God had our paths cross.  We are two people so very different.....but share the same disease.  I think the differences in us is an important part of why we met.  Maybe he could see that it wasn't just people like him that had this disease......maybe God somehow empowered him to take some steps to get the help he really needs, first.  Maybe it was to teach me something. I don't know.  I may never know.  All I know, is that God presented an opportunity before me where I could show someone love and concern....and I am thankful that he gave me the courage to obey Him.   They had asked for the name and number of my doctor.  So, I  wrote it down along with this verse:
     
" For I know the plans I have for you, 'declares the Lord', plans to prosper you, not to harm you. Plans to give you hope and a future." Jeremiah 29:11 
     When he left, I wasn't in the room with my mom and Melanie.  But, they said he stopped in and said he wanted to thank me.  I think that was confirmation that God was speaking to his heart.  I continue to pray that he and his wife will find peace and comfort through Him.  Could you say a prayer for him too?  Thanks y'all.  Much love! 

     

     

Sunday, February 26, 2012

Hearing from Him

"And I will ask the Father and he will give you another Counselor to be with you forever~the Spirit of Truth. The world cannot accept Him, because it neither sees him nor knows him. But you know Him, for he lives with you and will be in you. I will not leave you as orphans; I will come to you.  Before long, the world will not see me anymore, but you will see me. Because I live, you also will live.  On that day you will realize that I am in my Father, and you are in me, and I am in you. Whoever has my commands and obeys them, he is the one who loves me. He who loves me will be loved by the Father, and I too will love him and show myself to him." John 14:16-21
    When I had my small group of  girls, the sweet beautiful girls that are now in college, I remember they begin to wonder how to hear God's voice?  They had questions like" how do you know it is Him you are hearing....not your own wishful thinking....not our enemy....... sometimes I don't hear anything from Him as much as I pray! "  So, that led us to do a study entitled just that ~  How to Hear from God, by Joyce Meyer.   Preachers aren't the only people God speaks to.....it is just a matter of learning to recognize His voice.  I am so thankful that God led us to do that study......while He was teaching them, He was teaching me.....and being able to recognize Him anytime, but especially, in the midst of a storm, is priceless!  
      Joyce Meyer states that "God speaks to us in a number of ways. These ways include, but are not limited to: His Word ( The Bible), nature, people, circumstances, peace, wisdom, supernatural intervention, dreams, visions, and what we call the inner voice."  THE INNER VOICE IS BEST DESCRIBED AS A 'KNOWING' DEEP INSIDE.  I believe this is also the 'still, small voice' that is described in 1 Kings 19:12. "   In 1 Kings it states : "The Lord said, 'Go out and stand on the mountain in the presence of the Lord, for the Lord is about to pass by.  Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake, After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper. When Elija heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave."  
             For me, this still, small voice is the most common way He speaks to me.  This is when it gets confusing sometimes though ~ is it my own wishful thinking or really Him?  When this happens, I look at : 1. does it align with what He says in the Bible 2. Is there a peace that comes 3.And ,  I ask a spiritual mentor or friend for their wisdom.  Once I began to hear His still, small voice, it became easier and easier to recognize it and it wasn't as difficult to know when it is truly Him.  I will say that God's voice has always been loving and peaceful.....even when He is telling me something I don't want to hear! :-) Never has it been condemning or angry.  It is such a comforting peace.
    
Joyce Meyer : " How can we know that it is God speaking to us?  Three things happen:
        1.  We are filled with faith that God is going to do something wonderful in our life~we may not fully understand what that 'something' is, but we are filled with simultaneous feelings of expectation and thanksgiving.
       2.  We have a new awareness of God's presence with us.
       3.  We are led into a new level in our relationship with God.   Our hearing from God is rooted in our having a relationship with Him.  We communicate with God through our spirit~our spirit intuitively senses God's presence and receives revelation when there is a better way to do something. Our conscience is also a part of our spirit. When our spirit is made alive to the awareness of God, we can achieve fellowship with Him and receive answers from Him through our intuition and conscience. Our spirit and soul should work together, and the body should act as a servant to both." 
        
  This last week or so, my mom has been coming in my room and praying with me every morning.  She has been asking God for his guidance and wisdom in the way that I should go for my health problems.  Although I have been praying over these years, and asking, I was getting weary.  I guess the timing was right....because once she started praying, I began to see God opening doors and confirming the path that I should take.  I am thankful that He has been so generous with bringing people into my life to show me the way.......I am thankful He taught me and my girls how to recognize Him.   I am thankful for the peace that He brings, especially in the midst of this storm.  I pray that you, too, will know this peace.  "~ The Lord is with you when you are with Him. If you seek Him, He will be found by you......" 2 Chronicles 15:2    ~"But in their distress they turned to the Lord, the God of Israel, and sought Him, and He was found by them." 2 Chronicles 15:4   ~ "I love those who love Me, and those who seek Me find Me." Proverbs 7:17  ~ "Then you will call upon Me and come and pray to me, and I will listen to you. You will seek me and find Me when you seek Me with all your heart. I will be found by you, 'declares the Lord' and will bring you back from captivity." Jeremiah 29:13-14.
    The following is a suggested prayer from Joyce Meyer.  I will try to make it my own each day, and seek Him with all my heart.  


"God, open my ears and sanctify them so that I am sensitive to Your voice. Don't let me be distracted by desires that keep me from hearing You. Help me to listen and to learn to love times of solitude with You.  Don't let me become so busy or live a life so 'noisy' that it drowns out what You desire to say to me. Amen."   Much Love to everyone! 
         


                                       

Thursday, February 23, 2012

To blog or not to blog? That is the question…...

  “Speak up for those who cannot speak for themselves, or the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.” Proverbs 31:8-9


     I’ve been trying to decide if I really should blog about this journey…..I certainly don’t want anyone to feel as though I am writing for sympathy or so you can feel sorry for me.  Once again, worrying about what others think…..when will I ever get off that roller coaster?! :-) I asked my sister, Melanie, if that is the way it is coming across.  She said, “ No…..that is not your heart….your heart is to help others like they have helped you.  It is an opportunity to share Christ, His love, and His grace.  Haven’t the other blogs given you important information and encouragement? If that is true, then you should continue yours for the benefit of someone else.  It is not written for the healthy, but for the sick.  In the same way that Jesus came for the sick not the well.”  WoW!  That made my tears well up.  She also said that all of that came straight from the Lord….it just kept coming as she was typing and she didn’t even have to think about it. (She said her brain is fried, so Lord knows it had to come from somewhere! LOL!)  My dearest friend, Julie, also confirmed that it was a good thing.  She told me that she was proud that I was opening up and sharing…..it’s funny, because I don’t feel like I am sharing much that others don’t already know about me…..I guess my perception is different then what I portray….ummmm…..there is a lesson in that I ‘m sure. :-) I started praying ….I asked God to show me if this was really His will ……was my heart truly doing this for the right reasons.  I opened my Bible for guidance….and no joke….I opened directly to this scripture…. "Speak up for those who cannot speak for themselves, or the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and the needy.” Proverbs 31:8-9  I have met a lot of people who need someone to speak on their behalf about this disease.  They are struggling physically,  financially, and emotionally.  If my blog does nothing else but help them feel they are not alone……that God is there with them…..then it will have served a purpose….a purpose greater then me and my circumstance.  Thanks for reading……by the way…..Give someone a hug today…I’m sure they need it! 

Wednesday, February 22, 2012

What is the TP/AIT

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you." Psalm 32:8
 
~ Let me say, I don't know for sure I am a candidate for the surgery, yet.  Based on what I've read, and what the doctor who diagnosed me with CP says, I'm pretty sure I am, but there will be a lot of testing before I know for your sure. This is good as I certainly don't want to do this if it won't help! 
Having said that.....here is some general info about THE Surgery.....I will know more once I talk to the surgeon.


     The Total Pancreatectomy with Auto Islet Cell Transplant (TP/AIT) is not a surgery you just casually decide to have.  As my GI states, it is one MASSIVE surgery.  I have been told it is the most painful surgery they do. YIKES! But, I've also been told that the first few days after surgery, you don't remember, so I pray God will sustain me through those days, and then I can forget about them.  The surgery usually takes about 10-15 hours. They remove the entire pancreas. They usually also take out part of  the small intestine, the duodenum,  stomach and the entire spleen.  All of these organs share a blood supply and are connected so without the pancreas they will not survive.  Your pancreas , through the Islet Cells, makes insulin and controls your blood sugar.  They now can isolate those cells from the pancreas once it is removed......isn't that amazing?!  The hope will be that the amount of damage to my pancreas has not destroyed the number of good islet cells the transplant team will be able to harvest.  Once the cells are harvested and the surgical team has reconnected everything, the islet cells will be transplanted into my liver through the portal vein....I think via an IV. ( I will know more later) At first, I will be a diabetic.  The hope is that the Islet Cells will LOVE their new home and not forget how to function and get off their lazy bum and go to work. The outcome varies with this.  Some people are able to come off insulin fairly quickly, some have to take a moderate amount of insulin, some a lot, and then the worst case scenario , is that I could be a brittle diabetic. ( in others words, blood sugar that is VERY difficult to control.)  I will also need to take enzymes for the rest of my life to help digest my food since my pancreas won't be around to do that job either. ( But, he's already gotten lazy and isn't doing his job very well anyway!) 

This surgery is very specialized and is only performed at a few centers around the world. It is still considered somewhat experimental.  If it weren't for insurance reasons, it would be nice to be at one of the centers where they have performed 100's of these. I don't know yet how many Dr. Christein at UAB has done.  I hope a lot!  It will be nice to be close to home.......it will be easier on my family and will make follow up visits much easier.  Keep praying please!!! :-) Love y'all.

Tuesday, February 21, 2012

The Beginning of the Journey

     So, here it is .....my first blog entry.  I guess I will start by explaining as brief as I can the last 20 years of my health history! ;-)  I have struggled with health issues for a really long time.  I have seen just about every doctor there is to see.  I have been diagnosed with irritable bowel syndrome, chronic fatigue, fibromyalgia, Graves Disease, possibly Ehlers-Danlos Syndrome, Asthma, endometriosis.  I have had surgery to remove my gallbladder, appendix and a hysterectomy. And yet, I still struggled to live a half way normal life.  I was still sick a lot.........in and out of the hospital a lot! I was embarrassed and felt like everyone thought I was crazy, a hypochondriac or wanting attention. I tried to keep things quiet because I didn't know how to explain any of these problems.  As I'm sure you can imagine, I also struggled and still struggle with depression and anxiety.  

     Finally, my sister, Kim,  recommended I see her GI.....Dr. Dino Ferrante.  I love him! He finally started finding answers for me.  He suspected I had Sphincter of Oddi Dysfunction. Because it takes a very specialized doctor to perform an ERCP, the test that determines whether or not you have this, he sent me to see Dr.Kenneth Sigmand in B'ham.  He performed the test, I did have a SOD.  This is basically when the opening of your bile duct spasms and does not drain properly; and therefore, the bile doesn't drain properly....this in turn caused my bile duct to close up.  I believe all this caused my gallbladder and appendix to become infected.  So,  after the ERCP , I felt so much better for about 9 months.  But, then my symptoms began to return again. Once again, they did an ERCP, discovered the bile duct had closed up again, and they repeated the procedure with a balloon dilation.  Again, I felt so much better, this time for about 6 months before my symptoms started returning.  Again, I went for another ERCP, the bile duct looked ok this time, so they looked at my pancreas.  This is when they discovered, I had a birth defect of my pancreas called Pancreatic Divisum.  In short, they tried twice to "fix" this problem and give me relief.  Both times, I ended up with Acute Pancreatitis and a 5 day stay in the hospital.  I would feel a little better for a short while after each one but slowly the symptoms would just return.  And, in the meantime, my pancreas was becoming more and more damaged.  

      In July of 2011, I had my first acute attack, that came out of the blue one night.  It was worse then any of the others.  I stayed in the hospital for 7 or 8 days, with extreme pain and nausea that was very difficult to control.  Even once I left, I was still struggling.  My family encouraged me to seek help at The Cleveland Clinic.  So, off Butch, my sister (Kim) and I went.  We flew out there hoping for answers.  I have to say......during this time, I felt God speaking to my heart.  I would tell people, "I am going to the Cleveland Cleveland praying they give me some hope."  Well, I could hear God - every time I would say that, prompting......"Don't put your hope in them. They are just human. You will be disappointed."  Boy, was He ever preparing me....because I was SO disappointed in them.  The doctor there only performed one test ~ (one that isn't very reliable) and from that, determined it wasn't my pancreas still causing the pain.  Along with stating in their report that my pancreas looked ok, they also, said my gallbladder was normal in appearance.  If you remember from above, I don't have a gallbladder!  Needless to say, that was a wasted trip and a lot of money! Back to Dr. Ferrante I went.  He now calls me his favorite patient! ;-) I think this might be sarcastism, but he hugs me and smiles, so I'm choosing to believe he means it!;-)

Back to Birmingham for an EUS ~ Endoscopic Ultra Sound. The pancreas specialist there FINALLY discovered I had Chronic Pancreatitis.....which we suspected all along.  Now, this might be disappointing news to most.....but, at that moment....it was a relief to me.  I wasn't crazy! I wasn't imagining this pain! I finally had proof that there was a reason for my continued pain.  But, then, the reality of this disease started setting in and I was overwhelmed with what my future looked like.  Chronic Pancreatitis is a progressing disease ~ one that is very painful~ has stigmas attached to it's name~and no good treatment options.  I am living all of that out right now.  I've had continued hospital stays, where the nurses treat you as a drug`seeker and suggest you take tylenol instead of the prescribe pain medication......did I mention that the health care professionals agree that pancreatitis is one of the most painful diseases?! I am now at home with an IV....with much gratitude to my GP.......waiting to be referred to a surgeon at UAB.  This is the last resort for treatment......not a cure.  It is called Total Pancreatectomy with Auto Islet Cell Transplant ~ TP/AIT for short.  I will explain this later.  I think I've written more then enough for now.  Hopefully the future blogs will be shorter in length.  It was just hard to put into words 20 years of this painful journey.  Thank you to all those who read this......I know those who are dealing with this find much comfort in reading the details because it lets them know they aren't alone.  I know this because the first time I read someone's story that was almost identical to mine, I wept.