How do I start, in a place that says it all for me. I have spent the last several days reading page after page of people that belong to this great Inspire group. It was so heartfelt for me, that I could take so many different diagnoses and feelings from so many post here that I just want to say thank god I found you all ! I am a 49 year old wife, mother of 2 grown children and a grandmother of twins.
I have always been a very move forward person. Was very athletic, outgoing and always had a postive aspect on life. I am a massage therapist and have worked with helping people most of my adult life. I have always loved being a caregiver.
I was diagnosed with Severe Idiopathic Gastroparesis almost 2 months ago. Until that time I had never heard of this disease before in my life. I have suffered with IBS, chronic spastic colon, Fibromyalgia, herniated discs, and osteo-arthritis for 20 years, I have always been able to pick myself back up and move forward no matter how bad of a day I was having.
Two years ago is when my real problems began. I started having bad stomach pain, bloating etc. I ended up in the emergency room and with a simple ultra sound was told I was full of gallstones and I needed to have my gallbladder taken out. After the surgery, although some of my pain went away. I kepted telling the doctor that I still felt like I had my gallbladder and asked him was he sure he really took it out. I had all the same symptoms.
I suffered on and off for a year when I ended up back in the hospital with excessive weight loss, throwing up, bloating, feeling constantly sick and dehydrated. Test after test including a stomach emptying test all showed normal. I told the doctor I knew there was something wrong with me and left the hospital with no answers but with the assurance from the doctor that he didn't think I was crazy but he just didn't know what was wrong with me but thought that I might have Sphincter of Oddi Dysfunction and that I should consider having surgery too see if I did have that.
After reading that I could get pancreatitis from this procedure I decided not to do that at the time. (I am so glad I didn't).
I went through a year of misery, not knowing what was wrong, and as the months went by I got worse. I had myself totally convinced that I was dieing and was scared out of my mind. The doctor set me back up with a stomach emptying test and after laying on the table for almost two hours the technician doing the test said to me, I want you to get up and walk around for abit cause your food has not started to digest yet.
I said to her, what does this mean? That is when I first heard the words that she thought I could have Gastroparesis! All I could say to her is, what is that and is that a bad thing?
My world turned upside down after that when I went to the doctors office and I had my husband come with me and the doctor spent 45 mins., with us telling me how serious I had it and how little there was out there medicaton wise to help and if none of the drugs he gave me helped I would have to have a pace maker put in. That was about all I heard cause from that moment on I felt like I was in a tunnel and I was having a outer body experience of being in shock!
That was two months ago and I am fighting to keep pushing forward. I still am in denial alot and I find myself saying *why me?* especially on the days I am really bad. I am trying to keep strong and keep my mind and spirit calm. I find this helps if even for alittle while. Being a massage therapist I do find that massage helps alot. So many times I just want to give up. I am just get soooo tired of not feeling like a normal human being. But I tell myself everyday to keep going, be strong and positive.
Realizing how much eating is a social aspect of our lives, and not being able to participate in that has been the hardiest thing for me. I am down 25 pounds now and I fight everyday to keep the weight I have as I don't have anything left to lose, so maintaining is the *magic word* in my life now as being in the hosptial because of lack of nutrition is not something I like doing as we all know. Maintaining is so hard.
I have so many question, but I wanted to let you read my story. No matter how many people that love you and care about you, you can't help but feel alone and misunderstood. It just is so wonderful to have found you all. To be able to share and read about others that are going thru what I am going thru. I would not wish any illness on anyone, but to know that I am truly not alone and that there are so many of you that understand gives me some profound hope.