My journey

 My journey started the summer of 98.  July eighth of that year forever changed my future. I had a procedure ERCP to check for an obstruction in my biliary system.  Not long after the procedure I felt ill and was in alot of pain. The dr ordered a pain med and it subsided a bit. An hour later I was sent home. during the ride home I got so ill I started vomiting. I thought maybe from the anestesia I just wanted to get home in my bed.  Over the course of four hours the pain and vomiting intensified. My husband called the dr and was told to send me to the nearest hospital.  I remember seeing the emergency sign that night on july eighth. My next memory was in early september. I was hooked up to a breathing machine going into my neck. I could barely move and didn't understand why my mother was all happy telling me I was a miracle.

I had thought I was only in the hospital for a couple days. I wasnt even in the  hospital I thought I was in. I had been moved to brigham and Womans in Boston. Along with the breathing machine I had many Iv"s and drains attached. I couldn't beleive what my best friend was telling me during a visit. She is an RN she told me I survived ARDS. It is a respiratory condition in which your lungs no longer work. It was brought on from the sepsis infection I encounted from Pancreatitis caused by the ERCP.

During my ordeal I had many complications and surgeries and many calls to my family that I may not make it through the night. I felt more sorry for my family and friends than myself.  Recovery was a battle I had to relearn everything. Once my trache was buttoned no longer on the respirator  I was sent to a rehab facility. I think my mental recovery was more difficult than the physical. I learned to walk on my own after about two weeks. the rehab dr told me i was making a remarcble speedy recovery.  He told I could go home but I was scared.  My mind was still in a fog over what happen and where do I go from here. After I went home my kids went to school my husband went to work.  A visiting nurse came every other day for about two weeks. I was on so much medications I even had to give my self enzyme shots.   A drain  tube  sat outside my body that I had to empty. After about two weeks I had another pancreatic attack and ended up back in the hospital for about ten days.

I was always in pain but, tried not to let it take over my life. when I went for a recheck to my primary dr he told me we all have to live with aches and pains. I was like WTF. He also wanted me to go on paxil which is an antidepressive drug. A few years earlier I took it for a bout of depressin and it didn't do much  accept making me feel I was crawling  out of my skin. I left his office feeling so alone and upset by his words.After a good cry I went home and called my insurance co. to complain and switch my primary.

For about two years I was in and out of the hospital frequently.  Finally it was less and less but then another hurdle. Close to two years after my summer journey of 98 i acquired bacterial Pneumonia.  It was so scarey I prayed so hard. I had teenagers at home that needed me. My youngest is Albino and legally blind I worried about him the most because he developed a condition called Ciari malformatin. Its built up fluid in the brain which causes him severe headaches. So this hospital stay ended with me being transported to the same rehab I was in before. Again i had to build up my strength and walk out. Finally I was going home after a ten day stay. The lung dr wanted me to have a lung biopsy but, after hearing the side affects I declined.

About a year later I developed Psuedo cyst in my Pancreas. I needed an ERCP again so they could place a stent in me.  I ended up getting mental therapy first,  I had some therapy called eye movement desensitaion. Also given music to listen to. i was able listen to  the music  during my procedure and also admitted in case of an infection.

Staying  out of the ER or hospital was difficult. I was doing pretty good staying out for awhile. But, not long after I needed surgery due to a large obdominal hernia. I felt confident in the surgen he help save my life when I had the Pancreatitis and ARDS. He had taken dead tissure out of my pancreas which helped me turn the corner in 98.

My first granddaughter had her own struggle when she was almost two weeks old. She got RSV virus which alot of premature babies get. Her hospitalization lasted five months. She also acquired RDS  respiratory distress syndrome, the same syndrome I had in nintyeight. I  worked through my pain so I could stay close to my daughter and granddaughter . It was a long battle but, like grandma she came through.

Presently I am in war with my pain. I am trying to get off my vicadin so sick of the dependence.  Just want to feel less foggy and have more strength and energy plusno pain.              Am I asking so much to feel normal again?   I also take a muscle relaxer and nerve medicine. I have tried fentanyl patch did nothing for me. The vicadin helps but, lately I have less energy not that I had much due to my Fybromialgia.  Also some upset stomach. I ran out of my vicadin last week. Its been horrible but, I keep telling myself I will be ok. I am barely fuctioning. I see my pain specialist tomorrow hope I make it til then.   There has to be a better way. To bad I can't afford a jucuzi because I would be in it now. I have so much laundry to do but, I need to go up and down stairs. It"s not easy.  for now I will think of the little train that says I think I can  think I can.