I began writing My Unplanned Life with the quote “Life is what’s happening when you are busy making other plans.” For my life, there is probably no other quote more appropriate.
While I was celebrating losing 100 pounds through diet and exercise, having cured MRSA in my sinuses, continuing to accept the limitations of my spinal cord injury, but at the same time feeling stronger, I had to have my gallbladder removed due to ongoing pain in my side, shoulder and constant nausea and other digestion-related complications.
Following surgery, my pain level only increased and many digestion problems were further complicated. As a person who battles with diabetes and Cushing’s Syndrome, much of my blood work was showing some alarming results. As an example, my iron saturation levels were three, when normal ranges should be 20-50. And, my potassium levels were also dangerously very low.
As things go in the medical field, I was sent for medical tests and procedures, which led to further medical tests and procedures. The ultrasound to view my gallbladder indicated my liver was ‘unhealthy,’ therefore I saw a liver specialist. He conducted multiple tests and did every blood test known to man. Since he found my liver wasn’t unhealthy, he sent me to my gastroenterologist for additional tests, blood work, a colonoscopy and another test called a ‘gastro-emptying test’ ~ all in the record time of seven months! And, during those seven months I was doing things to actually make my condition worse ~ eating/drinking what I shouldn’t and taking medication, prescribed by the very doctors who should have known better.
When I was sent for the gastro-emptying test I was told I was being tested for Gastroparesis. When I first heard the name I thought my doctor was speaking a foreign language. I had never heard of it and actually asked the doctor to spell it while I wrote it down. Gastroparesis is a nerve/muscle disease, which literally translates as stomach paralysis. Those with Gastroparesis have stomach muscles and nerves that work poorly, if at all. Patients with this disease do not digest food normally or very slowly, or are unable to digest most solid food. For those who suffer from the condition a normal digestion system no longer works and food doesn’t travel from the stomach to the small intestine. Symptoms include nausea, vomiting, pain, bloating, and reflux — often severe and constant.
Gastroparesis patients (or GPer’s) have to learn how to eat differently, and in fact, live differently. Any medications, and there aren’t many, have such horrible side effects most patients opt not to take them. And, if they do, they are short lived. The majority of the patients get a gastro pacemaker/neurotransmitter or many severe cases end up with a feeding tube. One of the sadder statistics is there are currently 12 medical ‘experts’ in the United States who treat Gastroparesis. There are doctors who treat the condition; however, many are doing so incorrectly or poorly as in my case. There are approximately 1.5 million people in the United States living with Gastroparesis and millions more worldwide. Sadly I am unable to locate an exact number.
My doctor called me on December 20, 2012 and confirmed I did, in fact, have Gastroparesis. My gastro-emptying test revealed zero emptying during the numerous hours of imaging. He believed there was injury to the vagus nerve (the longest cranial nerve that runs from your brain stem throughout your body) when Dr. Liar hit my spinal cord and years of ongoing slow digestion could have been a result of this nerve trauma, like many of my other medical conditions that have remained delayed or undetected. He also told me in the same breath to Google diets for the condition and wished me a Merry Christmas. I was left confused, frustrated, disappointed and very sad. Merry Christmas to me ~ yeah right.
While I admit I went through the ‘why me’ and ‘what did I do to deserve this’ and haven’t I been through enough already’ moments, I tackled this newest condition/disease differently. Since it was the holidays and I didn’t have anyone to turn to professionally since most of the world is on vacation (as it should be), I did what my doctor suggested. I began searching the Internet for Gastroparesis diets and found it to be the most complex and confusing search I had ever conducted. The diets contradict themselves and what worked for one person didn’t work for others. I was beginning to feel lost, overwhelmed and as if I was never going to find answers.
While all of this was taking place, I had my encounter with the gentleman at the store whom shared with me about losing his wife recently and how he was struggling with getting through the holidays. I knew what I was going through was nothing compared to the suffering taking place in the world today. In fact, I wrote about it on December 23 (My Christmas List), just days later. And, I prayed about it that night. I asked God to please send me answers. And, he did…Christmas night. He sent me Crystal Saltrelli, a Dartmouth graduate, who was diagnosed with Gastroparesis in 2004, who went back to school to become a Certified Health Counselor. She, like so many others, was so frustrated with the misinformation she began studying Holistic Health and Nutrition and shared her knowledge through her blog and at the same time began helping others (hmmm…sound familiar?). She has a newsletter, cookbooks and her most recent book Living Well with Gastroparesis was the answer to my prayer.
It has taken me a few weeks to wrap my head around this disease, the lifestyle changes, where to locate the necessary supplies, what to stock the kitchen and pantry with and educate myself about exactly what foods I can eat and how to eat them. However, thanks to Crystal and a few days of a total GP diet, my stomach pain has decreased and my energy level has increased. While I still have a lot to learn, a new doctor to find, and products to buy, I am blessed to have found Crystal’s blog and book. She was the gift I asked God for and the comfort I need in this most current medical storm I am living. If this disease had occurred a few years ago, I believe it would have taken me months or even years to adjust. It’s been weeks and I am already feeling better. Ah, the power of blogging! Thank you Crystal…I will be forever grateful! To me, you ARE the expert!
Find Crystal’s book and valuable Gastroparesis information (including yummy recipes) on her web site by clicking below
©My Unplanned Life and http://www.shakinguplife.wordpress.com, 2013.