Friday, January 29, 2010

The Story...........

Everyone has a story --- Looking back now, I know I had celiac disease for quite sometime, perhaps as long as 10 years before my diagnosis.

I fell extremely ill on Oct 6, 2006 - arriving home after a long morning of a women's business meeting, errands, etc... I plopped down on the couch feeling exhausted, I just wanted to relax. All of a sudden, without warning, I felt my heart pound and my blood racing, I became dizzy, and then I blacked out and could not see. I swore I was having a stroke, I knew exactly where I kept the aspirin... blindly I reached for a baby aspirin, called my husband frantically telling him something was wrong with me.

The month of October, I visited so many doctors, countless emergency room trips, and in the hospital for 15 days, all while trying to work my business. My diagnosis was a very rare cancerous tumor - a lypo sarcoma - in my back about 6". Okay, I received my death sentence, where do I go from here??? 

I committed myself to the healthy lifestyle.... Nothing was passing my mouth that wasn't healthy, whole grain bread, oatmeal, whole grain pasta, fruits, and veggies  - I will eat healthy!

I was sent to Shadyside Hospital in Pittsburgh with thoughts of losing my grandmother to lymphoma, an aunt to ovarian cancer, and my step-father to pancreatic cancer, I was terrified. The doctor came up with a plan, and me being scared to death  I was ready to do whatever he said.

The week before Thanksgiving I had a biopsy done, and the day before Thanksgiving the doctor called and told me he was 99.9% sure the tumor was benign, but it had grown to about 9". He told me I could wait for several months, no hurry to have it removed, but I was insistent to have it removed asap.... I was so dizzy all the time, could barely even stand up... I wanted it OUT!

December 19, 2006 - scared and shaking we went to the hospital not knowing what to expect....

 ....afterwards the doctor came in and made a big circle with his arms.... told me the tumor was as big as a cafeteria tray - about 11x15 and it weighed 8 pounds- yes, I said 8 pounds! Between doses of pain meds I thought I am lucky to be alive, but I am going to be better now. Beyond the pain and soreness from surgery, I was feeling better, no kidding! Released from the hospital Dec 23, with tubes, and hoses, etc, I had color again, my brain was functioning, it was amazing. Even my wonderful family waiting for me at home remarked how good I looked.

Christmas Eve traditional lasagna dinner, with Italian bread, cake, cookies... the works! The next day our Christmas traditional dinner of stuffed turkey, green bean casserole, bread.... again the works. I was not feeling well at all, with all that I had been through it's no wonder, but now again this was different,  I was turning so pale, in just two days the dizziness was coming back, swelling, constipation, vomiting, it was getting worse, several days later diarrhea, I could lose 9 pounds in one day, what was wrong. So many different tests! I changed my primary care doctor 2 times since Nov - the one I had for 23 years - why aren't they helping me? I had a new symptom EVERYDAY, a different specialist EVERYDAY, and a new prescription EVERYDAY in January. The ER doctors told me not to come back unless I was having a heartattack, they could not help me! The doctors were starting to think I was psycho... I even had an evaluation of my mental status - thank heavens the doctor understood my plight with all that was going on and she said I was normal!  I was now having trouble turning my head from side to side, a constant toothache, fluctuating blood pressure, my skin was tearing, becoming dehydrated.... I swore I was being poisoned! Would someone please listen to me? - look at what is happening to me!

I found a very special neurologist.... she had a mission to help me,  she asked me many, many questions, but my answers kept coming back with I don't feel as bad when I awake in the morning, but as the day progressed I was more ill by each moment, ending each day laying on the couch after dinner with my blood feeling like it was burning my insides out. I could not hold my head up after 4 in the afternoon, I was too weak, and ill. The neurologist sent me on my way with a script for more blood tests... some days I had 16 or more tubes of blood drawn, my arms had track marks that weren't healing just from blood work.

After seeing three different dentists about my teeth, I decided to have two good teeth pulled thinking that would help my toothaches, the pain just went to different teeth. Is this what it feels like to be dying?

I believe it was the last day in January, 2007 that I received a small doctors prescription with the words, you had very high antibodies for gluten intolerance - Stop eating gluten.  I remember thinking, what's gluten.  I called the doctor and asked what that meant. "No gluten, no wheat, pizza, pasta, etc". Hanging up I was even more confused, I have eaten wheat ALL my life this can't be right. I looked on the computer a bit, but now I was in a state of shock, overwhelmed you might say.... I stopped the obvious that day, breads, pasta, pizza, but not even realizing what really was to come, or how hard it would be. I stated outload "I will never intentionally eat gluten again", and this became my mindset.

Receiving a diagnosis from a gastroenterologist on Feb 7, 2007 that I had Celiac disease was the beginning of my new life's journey.

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