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Life after the Diagnosis. Bringing awareness to gastroparesis.

by Valere Gregory February 01, 2018

Life after the Diagnosis. Bringing awareness to gastroparesis.

Hey guys, Val here!  First of all I would like to thank everyone that has reached out to me the last month, I really do take those messages, emails and notes you have sent to heart.
Since I have had several of you reach out saying either you have a friend or family member with gastroparesis and either offered advice or asked about my dietician, diet, medication or my gastroenterologist, I thought I would just share a few things that I find that have been working for me.  My ultimate goal is to bring more awareness to this chronic disease.
Since I was diagnosed the end of November of 2017, I am still in the early phases of finding what foods work for me, if the meds are helping with the symptoms and learning how to get my nutrients all in (please note, what will work for my GP may not work on another person with GP, every case is different.)
Some lessons I have learned the last month are:
1.  Don't plan anything because no matter how many " spoons" you save up the days before said event, your body may be in a totally different place than your brain.  I am learning to plan little and be more spontaneous after broken promises and failed commitments and the guilt that comes with them.
2.  Get a support group.  That may be your family, your significant other, your church group or an actual gastroparesis support group.  I have found 2 wonderful support groups on Facebook, Gastroparesis Support Group for Christians and Gastroparesis Support Group, both of these are closed groups to pt's with gastroparesis, caregivers or family members are welcome to join. These groups have really helped with suggestions on specialists, overall education on the disease as well as emotional support during the bad days.  I hope I can someday repay everyone in each of these groups with knowledge I learn during advocating for this disease.
3. Be patient.  Be patient medications will work, be patient with your body, be patient with individuals that don't know anything about your disease, be patient with your diet and be patient with God to show you the lesson in all the misery.  I am still working on this on a daily basis but I will say God has shown me that Valere Rene Handbags was not my only life purpose.  I think he used that for me to connect with people and grow an audience so I can advocate for gastroparesis and all the other "invisible diseases".  I honestly don't think he just gives you one purpose in life, as being a mother is my ultimate purpose where you learn the basics of patience.  I mean, I think every mother would agree with this one, he gives you these squishy babies to guide, teach, and love and you hope as a mom that when those squishy babies become adults they are actually GOOD humans! Lets face it, sometimes that is hard in today's world!
4.  Don't forget to laugh everyday. I mean lets be real here, this hasn't been easy.  The months before my final diagnosis of being so sick and then educating myself on this disease and learning that it is a forever disease.  I find myself cringing at the word feeding tubes, TPN and central lines.  It's only human to be in denial and feel like a victim and ask why me.  Fortunately, we got our own comic relief when we got Georgie our Boxer.  For those that haven't seen a picture or watched one of his video's, you are missing out on a good giggle.  I don't think Larry ever thought last March when we got him that he would be so important to my future.  He knows when I don't feel good, he knows when I need to rest, he knows when I need a laugh and he is a constant reminder of true friendship.  I have never had a bond like this with a dog in my life. He is definitely learning to be an unofficial comfort critter and makes me laugh every single day.
5.  Love hard.  Love on your husband, your kids, your family, your friends.  This disease can really be a lonely disease and it's so important to remember to surround yourself with positive loving people because some days it's difficult to find the positive in all of this and you need all the help you can get to stay positive.
As I learn more about this disease I will say things are getting closer to getting better.  The medication from Canada is helping with the constant nausea, the pain and the GERD.  My challenges right now is nutrition, joint pain, energy level and appetite. I never knew how much I would miss a growling stomach until it doesn't happen. My dietician has been a key person in all of this.  She switched me to some high protein/nutrient rich protein shakes that I drink twice daily, convinced me that I would feel better if we give my stomach a break and switch to baby foods, low acid fruit juices and meats that are mechanically ground.  I resisted at first but now that I have transitioned over I really do think it has helped with some of the symptoms that come with gastroparesis. 
The bad days are still outweighing the good days but I am hopeful we are on the right track to the good outweighing the bad.  I have recently started taking more vitamin and mineral supplements as some recent labs show a deficiency.  I go next week to get more labs to check some of the more important vitamins and minerals to see how I am doing on getting them in everyday.   Even with all the meds, supplements and nutrient rich foods, I am still desperately lacking in several due to the food limitations.
I also wanted to share my GI Specialist is Dr. Allen Weston, he is the only doctor in  a 3 hour radius that specializes in stomach motility disorders.  You can see what doctors are specialists here.  He is in the process in getting an independent satellite office back in Northwest Arkansas where I am located, but for right now I will travel to Galena Kansas for my follow ups with him.  My dietician is Jessica at Wellquest Clinic in Bentonville Arkansas and she is awesome.  I currently take about 10 supplements a day including my 2 protein shakes and take 3 meds for my stomach several times a day and then another 2 meds as needed for symptom control.
I have found the book, Living with Gastroparesishelpful especially with finding inspiration on my new way of cooking.  I have included some highlighted links throughout the article if you want to know more about gastroparesis, Facebook support groups and finding a motility specialist near you. 
In closing, all I am trying to do is bring awareness to gastroparesis and share my story in hopes that it may help some fellow GP warriors or spoonies and let them know that they are not alone and to educate the public.   If you have any questions about my experience, feel free to contact me through our Facebook page here.   My goals this month are to meet with my GI doctor, see if there are any clinical trials I am eligible for or any infusion therapies that may help with symptom control.  Thank you for letting me share my experience with you, it is in no way to gain pitty but to gain awareness for this rare disease and hope for more research to find a cure.
Valere Rene
Disclaimer: This information I have provided is my experience with GP and every case is different and I am by far a medical professional and this does not replace the advice of your doctor or dietician. In no way is Valere Rene Handbags or myself responsible for your medical education, this is merely my experience thus far. 
Valere Gregory
Valere Gregory

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