Monday, August 14, 2017

Eating tips with Gastroparesis

I just wanted to share some eating with Gastroparesis tips. I just really stumbled upon and I think are super helpful for me today. Maybe someone else can use them ๐Ÿ˜Š (all out of the book "Living (Well!) with Gastroparesis" by, Crystal Zarborowski Salterlli CHC) I love her books! She is a nutritionist who has Gastroparesis herself. Seriously she taught me to eat again with GP.... Now I have noticed a huge decrease in function lately. I am tired all the time, Sleeping 12 plus hours per day, I'm peeing more, I know I am incredibly moody, I keep having spells of feeling in a funky spaced out world, and it's like my brain isn't even working. So of course my first thought, "Why & when did I feel this way last?" When I was struggling with anemia back in January or so. (When I was weening off formula). Well I have been studying up on my GP nutrition and diet. I have a lot of things I notice now that I need to work on. I'm doing well but as most with GP it's a constant battle to get a balanced diet. I'm not so sure I'm anemic but I think I am not getting my good fatty omegas in. Aka your fatty acids. We need them! Signs of deficiency according to my handy dandy GP book is " excessive thirst, frequent urination, dry hair, & skin." -pg 85. (I have recently developed every single one of these symptoms. I mean I've been whinning over being so thirsty. I'm so glad I popped this book out today.) and I don't eat any of the foods that have the Omegas in them. (So I've got to fix this). I am always hungry even when I am full. Even sickly full! (Well I knew this one but forgot). You absorb your nutrition in the small intestine. So if you have GP and you are Starving even when eating or after eating.... Have a little bit of fruit juice! It will absorb faster and seep down in to give your blood sugar a kick up and make your body quit signaling that it is starving. (While the other food is taking its own sweet time as we know sitting in that tummy not absorbing at a normal pace. Which is why the body tells you to eat is the food isn't going down and being absorbed. This leaves me hungry and full at the same time. Stinking belly!) I definitely am dipping low blood sugar despite eating regularly.  Funny before I got this book out last week, I was up all night eating junky foods. I was just hungry as a hippo. And I ate crap food because it was late and I didn't care to be honest. Quick and easy. We know the double edge sword with GP... junk foods are the easiest to digest but are empty calories. They don't offer nutrition. (I also thought, "my nutrition must be great I gained a few pounds the past two weeks." But that's probably all empty junky food calories. So weight gain isn't a good nutritional measure in this case... Also I said it in the past. I will say it again. Weight does not measure your nutrition!) I started having juice since I was incredibly thristy and I quit eating late at night. So it goes to show how tricky eating and living with GP really can be. It's a mind game. I thought I was so stressed but now that I am putting the puzzle together... I was and am actually struggling to get a good rounded diet with a paralyzed stomach and it's effecting my body. Some thing all Gastroparesis sufferers live with. Even when we can eat by mouth there are complications. (See we are all #starvingforacure it's not just a catch phrase.)  So I am not calorie counting or freaking out but I will be monitoring my daily intake of omegas, proteins, & I realized my formula had vitamin K and my Orgain doesn't have vitamin K (only  big nutritional difference between them.) I also do not eat greens because use I can not break them down. I also started last week setting alarms because as I tend to get side tracked or busy. I forget to eat. That could be from being tube fed for so long... Just something I never had to think of I hooked up to feeds once a day and that was I. So even still I am constantly learning to stop and eat. And I think the alarms will help my body get a proper schedule. So I will just work on these goals and see. I know living with Gastroparesis is work and confusing. I know how stressful eating with GP is! But my advice is to listen to your body. It will tell you when something is wrong. (Mine has really been telling me that something is off.) Then think it through. Then simply do the best you can and seek medical help If needed. That's what they are for! (That's where I was headed before my studies.) I do highly suggest this book! It's full of information  and explains not just GP itself...  but how to eat, what is good trial foods, recipes, & it explains the nutritional end. Which seriously no one had ever explained these things to me like this book. And I had been living with GP for years and thought I knew all there was to know. Go check her out!http://livingwithgastroparesis.com/  It's been so helpful to me. And I loved being able to pull it out to check on a few things that I was suspicious of!  -Chelle 

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! 

Wednesday, July 26, 2017

Eat-anniversary

If anything this year I have learned that I am in fact tough. I have come so far and I am so blessed! And I am continuing to seek new treatment options. We think my Sjรถgren's Syndrome is a new culprit. (We let it get the upper hand when we stopped immuno suppressant therapy last year. Now it's showing back up it seems.) I'm ready to fight some more. I'll keep you posted. 
 I have the team of the sweetest caring doctors. Gosh I just never give them enough credit. One specialist just called and made me cry (good tears) just out of pure kindness. "Tell your Mom hi." I mean seriously how sweet?! She didn't even have to call me over the little medication break but that's the kind of care I strive for and fight for. I fight for the best care possible. I am one very blessed girl in so many ways!! My doctors each and every one of them are a true blessing. My medical team is such a blessing and I simply have been reminded of that this past week. I love my team and I don't even want to think where I would be without them. We all fight together. It's truly amazing. I'm going to cry some more about how truly blessed I am. I am doing so much better and making big strides. Though I have so much further to go.... I'm going. I'm living again and that's all I can ask for. Today a year ago, I had my Endometriois excision surgery. A year ago today I started eating again.(no surgical reason. Just God. He told me, "to prepare... That I would not be cured but I would function well again. Though it would take time."  It has been such a work in progress and a battle still. But I am doing it on my own. I'm eating!! I'm so proud and excited. Enjoy the simple things in life for they are truly the biggest joys. Tonight, I'm eating a hamburger and I am celebrating eating for a year! (I love my toddler milestones. Who ever thinks they will grown up to be sick? Or not be able to eat for three years? And then eat again? My life is crazy!!! Dysautonomia is crazy to live with. That's for sure but I am oh so blessed and my heart is full!) I'm so thankful for My Father in Heaven who guides me through this crazy life I lead. Looking back is weird looking forwards is weird. Right now. But I know I don't have to worry because, I seriously know I will be okay. I have a plan. His plan. Okay let's quit with the tears and go enjoy our blessed lives! You just never know what a year will bring -Chelle 

Wednesday, July 19, 2017

Pictures That Talk

Tonight at church during game night that I am not too talented at ๐Ÿ˜‰ anyone who knows me.... will know, I danced but don't expect me to do other sports for I lack the skill set needed. Between that and my health I chose to sit it out. Meanwhile someone needed instructions to the restroom. I told them "I will show you." So we go and I showed them. (I wasn't going to be a bathroom stalker. So of  course, I waited down the hallway.) Meanwhile I found myself in the exact spot standing in front of a beautiful  picture of Christ. It was the picture of Christ Healing the Woman that touched him. Who had been sick for 12 years. She was a younge adult female. Like me. I teared up a bit knowing that My Heavenly Father was indeed speaking to me. It was no coincidence. I do have faith and I know I can't be healed all at once. He has told me that's not part of my plan. It will take time and effort. It's bound to be a bit bumpy. But I know that message so clearly. And I know God is healing me from the inside out. I know Jesus Christ is My Savior and Redmeemer. I know He hears me. He always answers in those still, yet subtle ways. He knows my heart. He knows my pains and sorrows. He knows my losses. He knows my gains. He knows me better then me! He is showing me that I am waking down My right path. Looking at that picture I felt me walking down a trail alone. Then him walking up to me and grabbing me around the shoulders. Then leading me side by side we both will walk together down the path. And We are. He is My Savior and I love him -Chelle  https://www.lds.org/media-library/video/2011-10-031-jesus-heals-a-woman-of-faith?lang=eng

Monday, July 17, 2017

A Simple Notebook

This is a quote out of the Bible. And an answer straight to me from God when I did not know if My life would be even the slightest bit okay. But the night I read this verse during an ultimate trying time in my life. I knew... I would be okay. God himself told me so. I was in fact the tree...
Years ago I started collaborating My "Book of Faith" as I pondered the scriptures. During those times when I read the scriptures as many, I received  answers. It was as if God himself was taping sticky notes into the pages just for me to read. And He was. I got the messages I needed. And I threw them into a scrapbook form so I would not forget those hard but precious times. Today I stumbled upon the special simple book. Covered in verses of the scripture. Some scribbled down. Some nicely written with a pretty decorative twirl. It's just a bunch of paper really. But it means so much to me. My heart fills up just flipping brought it. It was answers on what to do in times of pure turmoil. When the world had nothing, I had faith. Because Heavenly Father Loves Me. Like he loves us all. I knew I was never alone & that I would never be alone in this world. I knew whatever happened. I would be brave and have hope. When hope was not be to had... Because that's what Heavenly Father was telling me to do. He told me to have hope. That's what stemmed this blog and has changed my life completely. Hope is so precious. It's a gift. We all are given hope... Because with faith comes hope. That very how instilled a fighter in me that I didn't even know was there. Due to that I have in fact overcome many obstacles. Some rather miraculous. Trials are sure to come. They will. They will come and they will break us, but if we hold onto our faith in the Lord and his promises to us we will be able to walk bravely in times of turmoil, trial, and personal struggles. We will hold our heads up high in faith that the works will not consume us. And in us will be hope. Because that's what God wants us to do. Hope. Have hope in him and his plan for us. Even when the plan is messy and stormy and we can't see an inch ahead of us. We must keep walking ahead with trust in him and hope for a magnificent future ahead. We all have one. But those trials come to teach us and test us. Without hope they come to break us. But with hope they in turn make us. They push us to become a better us then we could have ever become without them. God shows us who we can be and what we can do through trials. We will do things in life that we never dreamed of. Trials do that. But because of His plan... Hope is always there... And that's when miracles happen. Just hope in His Plan- Chelle 

Monday, July 10, 2017

It's Just Too Much

Last week was HARD! I mean seriously, I don't understand what happens in July but every single year it's a struggle. Maybe, it's because it's the month before  that anniversary comes up of getting sick. Maybe it's the stinking heat and having POTS. I am unsure but every year my brain snaps. So, if You are chronically ill, please don't worry about worry. Because I promise We all worry at some time. That gut wreching feeling that plagues us about what's going to happen to us... In our conditions... That feeling comes. Unfortunately it comes like a lightning bolt. That leaves you in paralyzing fear, with a shattered heart, & a mind full of memories likes picture show of what life was before illness struck. It's like dropping a snow globe and seeing it dramatically shatter in slow motion but Your real life. And there is nothing anyone can do to put that snow globe back together again. I have a strong faith in My God & his promise to Me. He told me I would in fact function well again, but not be cured. But I am too human. Though, I honestly don't like admitting it on my blog that for a second my faith felt small. (But I would be a liar if I pretended it didn't.) Every single year. I have bad days. I just don't let people see them so easily. And that's okay because I do believe in being positive, courageous, and full of Hope! That and my faith in God, Jesus Christ, & the use of the Holy Ghost have turned my what seemingly was a turmoiled, heartbreaking to watch life into a beautiful journey. And due to that my journey has been amazing. Yes hard. But amazing lessons followed by amazing spirtuial confirmations of how much Heavenly Father Loves Me & that I have a plan here on earth and eternal. A plan I willingly and happily abliged to. My journey isn't over and I will as God promised feel better again fully! And that's why at the end of a bad minute, hour, or week when I allow my fears to be bigger then my faith I always come back to him. Because I and none of us are ever alone in ANY times of trial in this world. We have a Savior who cheers us on and lifts us up. Thankfully I choose to snap out of it and come back home to My Father in Heaven and embrace his plan for Me. Even if that plan is not what I had in mind or hoped. Because He has the bigger and better plan. He has the knoweldge of the whole picture of my purpose. He loves me and like a parent He will teach me patience and trust. I will have faith and I will always at the end of the day rest in him. "Knock and it shall be opened" that's all we have to do is knock. (And if you know me that's how I manage my medical care I knock until no more doors are left.) Once I knocked, once I allowed myself to soften my heart and open those scriptures my whole outlook as always completely changed. Peace enters my soul. And today my soul was fulfilled with light. (Even after today some treatments noticeably wobbled unexpectedly, I did not.) May Heaven lift all my sweet friends souls and fill them with peace. We all have bad days it's how we brush ourselves off and get back up that matters. Satan will tempt you into doubt sneakily. But a bad day does not define anyone. Keep going, keep fighting in faith, (even if just a twig of faith), whatever that battle may be. May You be blessed, your heart full of love, & knowledge Your Heavenly Father is always there no matter what -Chelle 

Thursday, July 6, 2017

July 4th. Moving on.

I hope everyone had a blessed, safe, and happy Fourth of July Week! I enjoyed the usual traditions and had my first "Eating" Fourth in years. (That was nice) no IVS as well!! So happy about those big things this year! I enjoyed my Holiday with family and friends and it was in fact great. We are blessed to live in a country founded and built on God. God Bless America ๐Ÿ‡บ๐Ÿ‡ธ -Chelle (P.S. Last weekend I ate steak and potatoes au gratin My Fav!
and yes I was in fact in Heaven! Have to share my happy exciting moments. Because eating steak is a big deal for Me! I had to bring it home I can't eat a whole meal in one siting I have to break up my meals and eat every few hours ideally. For Gastoparesis and POTS believe it or not eating too fast will cause the blood to pool into the GI tract and make us pass out and/or symptomatic. I get bad tachycardia. So I ate it twice in one night and at ten o'clock at night I ate steak and potatoes in bed. It was in that moment I realized just how right I was raised) ๐Ÿ˜‰ I have a true feeling this next year is going to be another year of building my strength and health. Moving forwards more one day at a time. The battle is not over. So that I will be doing, patiently as possible. I can say for now some days are better then others. I embrace them. I am still learning how to eat again. That part I am starting to get down... The cooking for myself part is a struggle. Is hard to cook when you eat so little. But it's something I simply have to keep working on. It's weird to realize, I have relearned to eat this year. Now I'm relearning how to balance proper nutrition too. So some days are easier and some I survive... But one thing is certain, I have a plan and I will get there. Something crazy I did this past week was I got out of all support groups. After weeks of praying it was clear. I was nervous because those groups helped me the most in the beginning. But the same people aren't there anymore and they have turned into stressful groups with no support. It a whole different world then three years ago and I believe in being kind. Though part of me felt guilty that I would miss helping another...as I was once helped...  I was very conflicted. I realized I had to put the oxygen mask on myself first. You have to detoxify your life. I have to say it was freeing. Don't let the negativity of the world drag you down. Just find the light in your life. And my few friends that are sick like me that have stuck around are still with me, we have our special bonds. We help each other out as we can and that's all I need. I would help anyone at any time. (Please, Never be afraid to hit that email button. My favorite thing to do is help others navigate the confusion of being chronic or just offering my support.) Upon that leave group clicking. I found myself outside looking up at the pretty stars and moon. I knew in that moment  light is beauty in the world. That My Heavenly Father was directing me. I was doing the right thing. If you don't know I love stars. There is something about light (or to me glitter) in darkness. That's what I strive for to find the light in times of darkness. And when I do, I know I have, because Heavenly Father always sends me a sign... If I'm willing to look... I will be choose to be different in a world that is weak -Chelle "I hope you know You're capable & Brave & significant. even when it feels like you're not."