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! 

     

     

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! 
         


                                       

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! 

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.

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.