What the HECK is GP?

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

www.livingwithgastroparesis.com

 

 

©My Unplanned Life and http://www.shakinguplife.wordpress.com, 2013.

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About mswd

I am an individual living with a spinal cord injury. How the injury occurred, how I found out how severe my injury was and how my planned life suddenly became 'unplanned' is included in this blog. Also included is how the injury has tested my family and me. I believe you will discover it has been both a mentally and physically challenging ordeal and I learned a few lessons along the way. While I am still defining my life’s purpose since the injury, I have uncovered those who are injured, live with pain or have other obstacles to navigate are never able to escape. However, come with me as I explore ways to improve my life, learn to live with multiple neurological conditions, educate others and look for the silver lining. I believe with a little willpower, my caring family and God's guidance I will learn to forgive, hopefully forget how I was treated and dismissed by a doctor and uncover life's new purpose. I pray for painfree days and answers to questions that keep swirling through my mind. I also pray for a cure for neurological conditions and for the doctors to treat their patients with respect. Welcome to my journey. I would love to hear about yours!
This entry was posted in Disability, Dr. Liar, Holistic, Pain, Self Discovery, Spinal Cord Injury and tagged , , , , , , , , , , , . Bookmark the permalink.

23 Responses to What the HECK is GP?

  1. Thank God for the compassion and wisdom of the ‘ordinary’ folk who want to share their information. Hoping it will prevent or stop pain and suffering. Sorry for the bad news Marsha, but what a great post on determination.

    • mswd says:

      Thank you Colleen ~ it has been so frustrating to be sick and not know what was wrong with me. While I am tired of being sick, it is finally good to know what is wrong with me. And, while there is no cure, and that is also frustrating, I am a survivor. I will get through this just as I have done in the past. Thank you for lifting my spirits and for always posting a comment…I can ALWAYS count on you dear friend!

      • I look forward to your posts Marsha. It’s how I stay connected with you. 😉 I know you are a survivor, I keep watching. And learning from you. And I know you will do this. I know there have been times when I have been misdiagnosed or not diagnosed. With the blood clot everyone kept saying “you don’t want it to be a blood clot”. The day they finally sent me in for a different test I said YES I DO THEN I KNOW WHAT IT IS! And sure enough….it wasn’t ‘fun’ but a relief to know what to do.

        I will stay right here through this journey. Because I know I’m going to learn even more from you.

        🙂

      • mswd says:

        Thank you Colleen — I appreciate your kind words and knowing you are out there pulling for me. I know what you mean about the not know what is wrong with you part…the ‘not knowing’ weighs on your mind and can make things worse (since the mind is a powerful tool). I am so glad I have friends like you to share this journey and their special blogs to read each day to brighten up my day, make me laugh and broaden my knowledge. You are one in a million. XO

      • ….TWO in a million! That’s why we get each other so well. 🙂

        Thank YOU so much for all you bring to “our” world.

  2. Jo Seale says:

    Marsha, I have no words that will come close to your strength. You are truly a walking miracle. I have always been told by my grandmother that GOD won’t lay more on you then you can bear. You and I have truly been through quite a lot of medical issues. I’ve never known you to have a pity party even with all the obstacles that you have been faced with. You are truly a “HERO” and a blessing to many. I am happy that GOD put you in my path of life. Keep doing what you’re doing. Courage isn’t having the strength to go on; it is going on when you don’t have strength.
    Regards, Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.
    Jo Seale

    • mswd says:

      Jo ~ thank you so much for your lovely message. It means so much coming from you since you, too, sadly live with multiple medical problems. It’s a tough life ~ living with pain and questioning why; however, we as Christians have our faith to rely on. I am also very lucky to be surrounded with wonderful friends and family…like you! Hoping and praying 2013 is better for both of us! Thank you for your friendship, love and ongoing support. Keep being a beacon of light my dear friend ~ miss you! XO

  3. WordsFallFromMyEyes says:

    I feel that you’re very strong and forward, despite what you are going through – or because, really. I wish you the absolute best. I hope for you to always be well. This blog will be valuable to many.

    • mswd says:

      Thank you so much for your kind message and wishes. It means so much receiving messages from other bloggers. As I mentioned in the post, I have learned so much from Crystal Saltrelli (more than my own doctor and any medical web site)! It just goes to show how powerful blogging can be…and you never know who may be reading and what they may gain from what you are writing. Love your posts as well! Thank you again for taking the time to post a comment!

  4. Renee says:

    Reading your story is so much like mine! I hope you do well on your journey. I’m getting ready to try domperidone…and then trying to get my insurance to approve a stimulator…but I agree that Crystal and her books and support have been paramount in my illness and my doctor has even borrowed them from me!

    • mswd says:

      Renee ~ thank you for your message! You are the third person to mention domperidone so it’s time for me to mention it to my doctor. I have been on too many medications in the past, but I believe this one may be the answer! Crystal was/is the bright light for me. You, me, and so many others would have been lost without her. It is so funny you wrote about letting your doctor borrow your books. Mine wanted to borrow mine…but I told him I couldn’t do without them (even for a few days), so he would have to order his own copies (plus I wanted Crystal to sell more) 🙂 He graduated from Dartmouth, like Crystal so he didn’t mind at all! Thank you so much for taking the time to write and please, keep in touch. This condition is rare so I love learning and growing together. Best of luck with getting approved for the stimulator! Fingers crossed. Please let me know how you do!

  5. April says:

    So glad to meet more ‘GPers’! I have all of Crystal’s books and love her recipes. I, too, have gone back to school to learn advanced nutrition and holistic living. I chose a Christian based school since that would continue to support my personal views. You do briefly mention medications and the horrible side effects. I take a drug called domperidone that is extremely safe and is effective for many people – so there is at least one drug out there for us!

    • mswd says:

      April ~ I didn’t see Crystal’s post until I got home late today from physical therapy and what a wonderful surprise! I was wondering how so many ‘GPer’s’ were finding the blog…I should have known Crystal was involved! 🙂 I am so thrilled you are going back to school to study nutrition and holistic living. I have been thinking about it (more for just my own way of living and for my family since I am too old to have a new career!). I would love to know which school you have chosen since a Christian-based one would be my choice as well. Many thanks for the medication recommendation. You are the fourth person to mention domperidone just this week. I believe I am getting the message loud and clear 🙂 I plan to talk to my doctor about it on Friday! Thank you again for taking the time to write! Wishing you best of luck with your studies – GPer’s seem to make the best CHC’s! Please keep in touch!

      • April says:

        The school I chose is Vintage Remedies School of Natural Health. It’s self-paced and they offer several different type classes. I was having a difficult time finding a good Christian based school and happened to meet the founder of the school at a homeschool conference a couple of years back. If your doctor wants to try the domperidone, I do know a place you can get it. You don’t even need a prescription (although I’d still recommend your doctor oversee the dosages and such). You can e-mail me directly if you want/need that info! 🙂

      • mswd says:

        You are awesome April ~ thank you so much! I am going to look into the school. I am loving how I feel since changing my diet last year when I was diagnosed with Cushing’s and diabetes and believe there is so much more I need to learn. And, now with GP, it’s a whole new ballgame (as you know)! However, I feel this may be the path for me. I might as well jump in and love it’s self-paced. I will email you so we can keep in touch and let you know what the doctor says about the domperidone! Thank you again! I really appreciate you reaching out to me! XO

  6. Kimmie says:

    Given the opportunity I reccomend you take Crystal’s class. There is so much more information and support provided.

  7. mswd says:

    Kimmie ~ thank you so much for the recommendation! I want to take Crystal’s class and plan to soon. Unfortunately (or fortunately, whichever way you look at it), we live in a rural area and don’t have Wi-Fi so Internet usage is limited to a Mi-Fi system, which is slow and restricts data usage each month. I go to local places and use Wi-Fi, but it makes it tough with my spinal cord injury to get comfortable. I have downloaded many of Crystal’s talks, bought all of her books and do what I with a can with the lack of technology! One day I am certain the cable company is going to get tired of my weekly emails and extend the cable the 1.5 miles needed for my neighborhood! Fingers crossed!

    • Kimmie says:

      Good luck with your Comprehensive Management Plan. We are all slowly building our individual plans with baby steps. I have found it interesting that so many of us have multiple issues to deal with along with our gastroparesis. Unfortunately (or fortunately, whichever way you look at it), lol, there are a bunch of us to share our collective knowledge and help each other out. Welcome aboard!

      • mswd says:

        Kimmie ~ you are so right, building a comprehensive plan is so important and that is what I am currently working on. The GP diagnosis came out of left field (which seems is the norm for most) and I am now juggling life with an SCI and a new, interesting diet as well. I am so glad Crystal shared my post and so many have reached out with recommendations, support and love. What a fantastic group of people GP’ers are! I don’t know what it is, but if I had to be diagnosed with a condition…this one is one filled with wonderful, loving, kind people ~ you included! Thanks again my new friend! Please keep in touch!

  8. Kimmie says:

    How are you doing with your management plan? Do you have any pieces in place? I worked the book on my own but was so random with it all. This time I am building step by step and it is working much better. I hope you feel you are making progress.

    • mswd says:

      Hi Kimmie! I am doing much better, but it is SLOW! I am going to send you a private message if that’s ok. That way I can update you with my progress and maybe you have some advice. Thanks for checking on me! Look for my message! 😉

  9. LC says:

    Did anyone mention erythromycin as a possible treatment? I’m not thrilled about taking antibiotics daily but it is has certainly provided me with some relief.

    • mswd says:

      I am so glad you are getting relief with erythromycin and don’t feel badly for taking it…we all have to do what works best for our bodies. I began taking bile salts and it was working for a while, but now I am back to looking. It is such a complex condition, isn’t it? I am going to talk to my doctor about erythromycin and I thank you for reminding me…I had forgotten! Thanks for reading the post…all of us GP’ers are in this together!

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