Thursday, July 27, 2017

You are SO lucky you don't have to eat!!

Gastropresis Awareness came early this year folks. 
Sometimes people tell me how lucky I am....They tell me, "I wish I didn't have to eat...Like You." They envy that I seemingly don't have to eat with Gastroparesis (or eat very little). However the reality of this is frightening to be honest. Some days are golden and I am amazed at how and what I can eat. Some days I'm fighting a lot... I fight for every calorie and every bit of nutrition. Some days my body is starving but I can't eat the foods in front of me. But daily it's a battle of some sort. The truth is I do have to eat. My body needs nutrition just like everyone else's. Gastroparesis doesn't mean my body can run on air. It's not a game. It's not simple. In fact maybe, I'm skinny but feeling weak is not fun. Being dehydrated is not fun. Worrying if the tube feeds will end (when I've come so far).... On a bad day is not fun. I do replace what I can not eat daily. At the end of the day, (everyday) I replenish nutrients by Orgain or formula. (So I can maintain a proper BMI. And be healthy. No one sees me sneaking this in.) I have been told too many times to count how skinny I am lately. And the funny thing is, I weigh the most I have ever weighted on my own! I'm holding great. But it's work. Hard work. Balancing nutrition is serious business for me. It's hard stuff. And I want people to see that it's not convenient. In fact being able to eat very few odd things is inconvenience. Knowing if I eat that I will be so sick... It's not pretty. Loosing muscle mass because your body is bow burning muscle because there is no fat left is miserable. Low blood sugar? Not fun. Every single thing in the body is effected with poor nutrition. When I eat a few bites... It's not a choice. I want the whole thing.(the whole enchilada so to speak.)  Wondering, "what can I eat today?" (Every day) Then when the day is ending and I'm realizing I need a lot more food and time is ticking... That's hard... Searching through the kitchen to hopefully find something that I maybe, will be able to eat. Not fun. And then when it doesn't work out and I have two bites. Waste of time. (And food). Be thankful your body has the ability to digest food properly. Because the other side of this is ugly. I always think "no you are so lucky you can eat. Starving is not fun." Just because I can't eat doesn't mean I do not want to eat. Gastroparesis is a condition that weens and wanes. Some days I eat a cheeseburger. Some days I eat a full liquid diet and pray every calorie sticks. Some nights (tonight) I am up late eating in bed, two crackers topped with low fat peanut butter because I know I need the calories. Though, at two crackers I am stuffed. If I continue to force feed.... I will be ill. And I will loose the nutrients I consumed. Also those nutrients I just intook may sit in my stomach for many hours or days. In that time frame, food nutrients will die off, leaving me empty handed. (But my body still says "I'm hungry") Some days I eat so much because I can't take it and I give in to my hunger pains... Then I am literally sick for hours. It wasn't pretty when tubes were being shoved up next to my heart because I was dying of malnutrition. It wasn't pretty when they added the naso feeding tubes. And it was hard living with countless GJ tubes. Surgery after surgery. I still have a feeding tube. Oh did I mention the daily IVS??? Or how easy it was dragging around all of this equipment all of the time. 
Don't take what you have for granted eating is a blessing. And I am blessed to be eating! so blessed. But I just got to thinking maybe this side isn't shown enough.... It's not pretty. Maybe, I didn't educate about Gastroparesis enough and show how serious it is. Maybe I didn't example how important nutrition is to the human body. Unhealthy is never pretty! eat the food. whatever you love eat it! Skin and bones should not be a goal. Healthy bodies should. Tough love -Chelle here is a glimpse of starving for a cure! https://youtu.be/sM27ewIDtnI I have literally almost lost my own life to this disease. And I have lost too many friends. Their docs didn't get them a tube in time. Their bodies quit absorbing nutrients. They got severely dehydrated and passed in their sleep. Unexpectedly. All too soon and too young. (And continue to do so regularly.) this is fatal. And I'm sick of the misconceptions! So, I'm breaking them and speaking out. August is Gastroparesis Awareness Month. I'm sure I'll be sharing info and awareness so keep your eyes out! Just because I am handling my condition well today doesn't mean I've stoped fighting!