Rebecca started this as a tool for me to communicate the status of my condition and updates.  I’ve always been rather private, but I find myself surrounded by people who genuinely care and for that, I am so blessed.  I will try my best to give updates on the progress of my treatment.

I will begin by telling you how this diagnosis began.  It is a bit long, but my goal is to spread awareness.

I woke up one morning around 2am the first Wednesday in October of 2018 and I was sick.  No big deal, probably some neurological stuff and a stomach bug.  The issue was that it has never gone away.  I continued every single day to vomit everything I ate and had unimaginable stomach pain.  I was referred to a Gastroenterologist.  He started with basic testing and this continued for a few months.  I began dropping weight very quickly.  At one point, I lost 11 pounds in 9 days and that finally got their attention.  I am currently down 61 pounds.  I continued working through this even going into work after many ER visits where I would get home at 1am.  My GI finally said the only test left is a Gastric Emptying Study (GES).  He said it would be very rare I would have a bad result, but none the less, he ordered it.  It came back with severe abnormalities.  I finally had a diagnosis!  I would soon learn that the diagnosis was not good and my life would be forever altered.  After four hours of monitoring my stomach, I had over 50% left in my stomach.  The test itself made me extremely sick for several days.  My diagnosis was Severe Gastroparesis.  Gastro meaning stomach and paresis meaning paralyzed.  Basically, it is like I have a stomach bug every single day.  Some days are worse because it flares and that makes the pain brutal and excruciating.  

Now that I had a diagnosis, the next step is how do we treat it?  Unfortunately it had no cure and due to strict US regulations, I would have to get a medication from New Zealand called Domperidone.  It is not FDA approved and you sort of have to jump through hoops to obtain it.  Insurance does not cover it.  I anxiously waited for it to arrive in the mail.  Once I received it, I took a leave from work.  I was just so malnourished, I needed to work on getting myself and my condition manageable.  The medication amazingly worked, but it was short lived.  Five days into it, it quit working.  The dose was increased, I ordered more.  I was finally able to keep some liquids in, but not a lot...just enough to keep hydrated.  My GI finally sent me to a Gastro Motility Specialist.  I had to wait 10 weeks to see him.  There is only one group in Indiana so the wait times can be long.  My meds are being tweaked constantly it seems.  I am currently scheduled for a procedure/surgery on July 24th at IU Med Center.  They will do an endoscopy and Endoflip.  They have the only equipment in Indiana to do this fairly new procedure.  They will also go down into my stomach to the opening at the bottom of the stomach called the pyloric sphincter.  It connects the stomach and small intestines.  Once food is broken down by the stomach, it goes through the pyloric sphincter into the small intestines.  They will be injecting the pyloric sphincter with Botox to loosen it up.  They hope is that between the Domperidone trying to stimulate the stomach muscles and the Botox loosening the pyloric sphincter, I may be able to pass soft foods through and stop vomiting.  This is only a temporary fix if it works. I will see a Neurologist at IU Med Center next week.  They want my brain checked again and they believe this could all be due to vagus nerve damage from my brain surgery.  They are also working to get me in with a pain specialist to do some testing and possibly doing some injections that target the stomach nerves to calm down the pain.  I may eventually have a feeding tube.  I did get some good news.  Insurance is going to help pay for Ensure and a powder that provides calories...yay!  Who would have thought I’d ever get excited about getting Ensure deliveries from a Home Health Care?!?!  Gotta find some humor to survive this crazy mess!  🙂😂

I currently take in about 3 tablespoons of soft food every day.  I typically still vomit every day and get stomach pain.  It is humiliating vomiting on yourself or in the presence of other people.  I have recently starting having some good hours some days and I do what I can to enjoy those times by getting out and spending time with my family.  I have a huge support system and they keep me up when I feel like I am failing and want to give up.  I have had some very dark moments, but I have been able to reach out and find my strength to pull myself back together.  I have figured out it is ok to fall apart and grieve for everything I’ve lost as long as I never give up and I won’t.  I will find my normal again and I will fight for a cure.   This will become manageable for me.  I miss working and I hope I never take little things for granted again.  I am speaking openly not for pity, but to educate and raise awareness.  If my story will save one person, it is worth it.  

I do feel blessed to be a child of God and surrounded by people who care.  I appreciate all your kind words, it has been so heartwarming to know I am loved.

#gastroparesis

#starvingforacure