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."

Thursday, June 29, 2017

Hello Summertime

Some days you own the fact that you have chronic health issues ๐Ÿ’ช
Today I had my first Coke in years* (totally not okay to have caffeine with POTS... Hello tachycardia.) but it's Summer and I thought, "You only live once." It's a little thing but it's a big thing... Happiness My friends! So we sipped and rotted our teeth away lol Nope, My name is not Crystal... It could be Pearl though as I picked "Cherry Coke". Which is an old favorite... Hmm maybe that's a genetic  thing? But this Cherry Coke is My one time a Year adventure! 
I also took a simple luxury and bought sunglasses and some makeup. I made myself use up some of my 'ten year supply' of makeup and I haven't bought any makeup minus, foundation and mascara since last fall! (Yes I am proud of myself... That's hard to do for a Makeup Geek.) I am a proud makeup hoarder (as You probably already knew.) However, it was time to clean out the drawers of makeup and use some of it. (Mostly so I could make room for more right ๐Ÿ˜‰๐Ÿ˜‰) Maybe I'll find a new look since I've been on the same three smokey eyes for a year now. A little inspiration. I mean I used to have a new look every week... Haha. I have reserved my makeup skills due to tremors in my hands and weaknesses. What was therapeutic became frusterating. In what felt like overnight. Unsteady hands do make makeup applying harder. But as I have with everything else in life... I won't let disease take that away from Me... I won't let some slight wobbles of eyeliner get in the way of life! (Isn't that what q-tips And "fixing it"is for ๐Ÿ˜‰)  I simply just enjoyed My day today and I felt like Chelle again ๐Ÿ™Œ (not the old Me... As in before sick... I don't need to be her. Just the regular Me I have become.) Today however, not some incredibly tired aching zombie person I've been for a week. I also woke up at 9am this morning!! That's a victory to my broken sleep schedule! Overall, I had a great day. I wore sunglasses in my house ๐Ÿ˜‚ I loved on My doggie... I was a goofball. I was happy.
I trialed some treatments that have worked in the past and I hope it snaps me back to the good side of life. Already my joints are feeling better and my lungs are clear from this nasty smoke!. "Just get through July", I tell myself daily... ( I would like to add this year is full of improvements. Even not feeling good. I have improved.) But just two weeks ago I was being snowballed with signs from Heavenly Father that I am moving forwards. And I am moving forwards! That means new trials to turn to triumphs. Sure, new things to conquer ahead... I have got to retrain and restrengthen this weakened body. Which was overwhelming to realize... But then I realized.... "I have the ability to regain physical strength. I probably won't fully regain it honestly. But I can become stronger again... What am I upset about? This is pure hope sitting in my lap!" New tasks to be completed. This World is not holding Me back. I have faith in what I know... And that My friends, is super exciting. That gives me hope. Just keep moving! (Literally) Look for the sparkle in everyday. Find joy in simplicity, for simplicity is where true happiness lies. One day at a time -Chelle 

Wednesday, June 28, 2017

Just a quick medical where I am at, update

I'm simply physically tired. The heat is just too exhausting. I mean SO tired I let myself take a nap yeaterday. (You all know I don't let myself nap due to insomnia.)  I have seen my pelvis specialist and Endometriosis is finally moving in the right direction. (Took a u-turn by accident post surgery last year.) after altering treatments we are in high hopes we finally are moving forwards though I have a long ways to go. My doctor is amazing and is working hard with Me. Endometriosis is no reason to live in pain. And that's the type of Doctor you should have! Also She doesn't think o have a hernia. My belly is now weakened from too much cutting and that's my pain and weird belly button soreness. (I've had 4 surgeries through that area.) I also had my nerve conduction study on My hand/arm. So, we will see what that brings. If no info we will keep searching. There are reasons. (It could be elhers danlos syndrome. With inflammation I am feeling, I wonder if it's autoimmunity striking up.) I have had a ton of inflammation and pain all over so again, I know something is going on and I just need rheumatology to figure it out. I do have autoimmunity. I have multiple autoimmune diseases... The biggest hang up is... I have been diagnosed with Sjogren's and undiagnosed. My last Rheumatologist left it at he couldn't say "no I don't have it" nor "yes I do"... Come back in a year. So I am going to ask my kidney doctor to help me as she sent me before to an amazing one who was known for dealing with complexity bit the move happened. I need to know definetly because they have just released to all POTS patients that we should if suspiciously are undetermined diagnosis of Sjรถgren's syndrome we must determine if I have Sjรถgren's syndrome (I can start IVIG treatments and it should be successful in treating sjogrens and my Dysautonomia.) they also really are starting to find information pointing that Dysautonomia is an autoimmune disease. (Which for me makes sense.) I also am still deconditioned. So I will be in the nearer future picking that apart and entering even more complex physical therapy (I don't think it ever ends, physical therapy.) I am sure this post seems like a downer in comparison to the others. I am still doing so well. I am SO very blessed. I mean I am eating folks! Those mountains I have climbed this year... They were still tackled. I did go to the top... but now it's time to keep moving forwards and keep climbing the rest of those mountains left.  Because I do still have a ton of conditions that are contradicting each other. I am still medically fragile and I am physically  weak even with my great progresses. So we will start tweaking care again. I just have to get through July and August (mostly July with the heat intolerance.) Due to heat intolerance physical therapy out of town has been paused. (Since it's so severely hot where I attend my treatments.) We all feel it's necessary to avoid the heat. I have to take care of my whole body as a packaged deal. I can not regulate my temperature so heat is horrific to my condition overall. So we will break and restart probably very hard in the fall. That's my update. From the few days of medical evals. After all, "mighty change is mighty hard"- Neal A. Maxwell. Though I am so fatigued and hurting. After a trip home I still got my cardio in because I know how important it is for my body.

(And as I got on my foam roller to strengthen my hip flexors and back and I didn't fall off of it๐Ÿ’ช improvements folks! There was a fleck of glitter on the floor next to my roller... A sure sign from above that I am doing the right thing.) Eapecially when it is tough, Keep up your good fights -Chelle 

Tuesday, June 20, 2017

Bye J

Bye J! Thanks for a you have done for me... You fed me, gave me nutrition, & literally saved my life for years. When my stomach paralyzed enough to not even handle a sip of water. It was You who fed me through my intestine. You did the work of my stomach. For that I am forever thankful. Bye bittersweet friend. We had tough times when you coiled multiple times & hospitalized me. When you had to be replaced every few months under full sedation. Minus that one time they tortured me with twilight sedation that did not work on me. You're a good friend. My quality of life bettered thanks to you. Life You sustained me for years. For now we say goodbye because I am so blessed to regain my ability to eat by mouth. I pray this works out and I can continue to be stronger. That I can eat by mouth all the time.  Plus stay out of the operating room. And that the G tube covers your job now of nutritional backup. Gastroparesis I'm here to kick your butt! I'm so blessed to regain ability to eat. Heavenly Father has healed me and continues to. He has Me on a path and I have faith in him. Though I would not be cured, My quality of life would greatly improve. God told me that and it's been true. Today I put My Big Girl Panties on  & I literally Pulled out my own GJ tube all on my own. The whole two feet of it! (Yes, I am rather proud) I also replaced my own Gastric feeding tube by myself. Today I graduated upwards as a Tubie! That old GJ tube was coiled and last night had me doubling over in pain. I suspected the tube was coiled for a while now but it wasn't giving me issues until a few days ago. I was full very quick. (Like two bites) and I was having severe sharp stomach pain. My j tube had come back up into the stomach and coiled in a loop. This in turn made the tube press against the top of my stomach where the stomach and esophagus meet. There is a main valve there. It started actually injuring me and it gave me sores. But I have thought on it. That coiled tube was a blessing. We knew I would most likely be changing my own tube for the first time. (You see j tubes have to be guided under radiology for placement down into the jejunum. Gastric tubes stop at the stomach.) So I was going to have to pull the J portion out of my small intestines. But because of the coiled tube it was just in my stomach and could easily come out. I have had automatic releif of the sharp pain in my stomach I've had for days now. I truly feel it was a blessing. It's just one tube now! Here is to new beggings! "And I am Not My Body"- Stephanie neilson 
G tube life here we go! Would You call this The secret life of the American Tubie? Gastroparesis Warrior mode on ✔️   Love -Chelle 

Thursday, June 15, 2017

A year of Faith, Moving Forwards, & Heavenly Signs

Today I feel like a whole new person! I feel full of life. Today was freeing after being so trapped in the house. I'm happy! I'm blessed! 

Glory hallelujah! I was growing concerned. Though, I in fact knew I would be okay. When I fall I full fledge face plant. Life of the medically fragile. My POTS was very flared up to the point I was growing concerned. I even started thinking, "Okay what treatment can I start now? What study can I enroll into?" (There are some studies and treatments I follow that are new for Dysatuonomia.)  It takes nothing to turn my life upside down. But yesterday I started turning around. We pray to stay on this good  path. That said, I have a story...
Today I woke up and got dressed. I had labwork and appointments. I had to shove myself back into the world after 3 weeks. I haven't worn these shorts in a year. I almost took them off. I wasn't sure I still liked them. None the less I was sitting in the waiting room hours later. Something started stabbing my hip. So I reached in my pocket to find a feeding tube cap. It made me really think about how far I have made it this year. I had a backpack of formula hooked to a feeding tube the went into my small intestine fully avoiding the stomach. That's how I ate. I had IV fluids everyday. That's how I drank. This was because my feeds were too low to eat and drink and I was dehydrated or starving day to day. So they put me on daily IVS. 
This photo popped up on my memories today... One year ago my feeding tube broke and fell out. It was a crazy time. (The actual story is pretty funny you'll have to go look back to last year and read it๐Ÿ˜‰) I had spent weeks with my GI explaining something was wrong. I couldn't feed without becoming very ill. I was tasting all my medications that I shouldn't have been but it was going into my paralyzed stomach. I ended up having a hole in My feeding tube so it really was feeding into my stomach. Which was avoiding the whole point of my Jejunal feeding tube. My GI felt horrible about it, He had been very busy  and didn't stop and listen to my issues. They all pointed to the issue at hand. Due to that I was not able to eat all that time. I then had to have a full surgery to recut my stoma and replace my feeding tube. I ended up getting refeeding syndrome. Meaning I had to start my feeding rate from scratch all over again. I could only feed maybe 10ml per hour at a time. I was malnourished. It took Me down the whole summer. I battled hard to have my nutrition. The second I regained enough to be in the safe zone, I caught some flu like virus. (In the middle of summer) my neurologist panicked with concern. I will never forget him calling me. I then got over that with a week to spare before going into surgery. (I went back and forth on actually going through with the surgery.) but I prayed and I was told "to prepare." I mean I had been praying for what, 9 years? For healing and one night I was told to "prepare. I would not be healed fully but I would function again." And just like that I slowly regained the ability to eat and drink. I was able to better control my diseases. It was definite divine intervention. God was in fact healing me. The world threw me nothing but ways to become sicker and my body was in fact healing. My mysterious disease was back tracking.  My crew of doctors were all stumped but of course we were happy. We all held hope but were nervous to see if this was truly going to last. I had faith. I knew what I had been told. This feeding tube cap (literally garbage in my pocket)...Was a sign of where I have been and where I am going. It was not a coincidence and I know Heavenly Father has a plan for Me. I am a survivor. I almost starved to death but I did not. That cap didn't make it through the day and the laundry to be found a year later in my pocket on just the right day for no reason. There was a definite reason. Divine intervention. Don't throw your garbage away! Just Kidding! but always pay attention to the little things You may stumble upon during your day. Someone might be trying to tell You something. Please never give up on yourself! Here is to a new year of mysteries! -Chelle 

Sunday, June 11, 2017

Prayers for POTS

Today has been rough a bit. Though I tried to push through it my best... My POTS is flared and has the upper hand today for the first time in a long time. I have had a virus. The past few days... Viruses are the worst thing for  POTS it always has the potential to change the course of disease. (Plus I just had surgery) I'm very tachycardic to the point my lungs are having a hard time keeping up with my heart and my blood is thin despite my treatments to rebuild blood volume. I also noticeably can tell my blood is not circulating as well to my brain and heart. Leaving me so incredibly fatigued with any task. My stomach hurts everytime I eat anything. I keep going pale probably due to low blood pressure. I am dropping things because my hands keep going numb. Every step is like walking in mud it takes so much energy out of me. My legs feel heavy. Every movement in general is so heavy feeling it's like I have weights on me. My feeding tube is broken but okayish any day it's going to go. Luckily, I have my G tube on hand but it's going to be a big leap. This is POTS it's ugly and mean... I have a strong faith I will be fine. God told me so. But prayers never hurt anyone ๐Ÿ’• just have to fight this bad flare and put POTS back in its place. (I fight back) love you all ๐Ÿ˜˜-Chelle #chelleshope #onedayatatime #fight #faith #prayers 

Friday, June 9, 2017

Late night divine interventions

I have not been able to sleep since surgery. Insomnia is a regular struggle for me. Thanks to Dysautonomia... But it's severe now. Obviously it is 1:24AM. But In the past 15 minutes I realized something... Maybe there is a bigger reason I can't sleep? I was not even on Social Media. But due to boredom I hopped on. Late at night you find several sick people. You find them because they too are suffering from insomnia or painsomnia. They are up worried. Or they are maybe in hospitals up trying to navigate the medical world. However in the past 15minutes I have easily managed to help 2 strangers. In rough situations. All I can think is maybe, Just maybe... Heavenly Father puts me in physical situations so I can be of help to others. Maybe I can't sleep just so I could talk to two strangers and help them along an already tough night. Maybe not sleeping has absolutely nothing to do with Me and everything to do with being available at the right time to help others. I also noticed tonight others weren't on like normal so it was pretty dead for advice. So I would like to admire that God puts us places at the right times. I'm lucky to be able to have the hard earned medical knowledge to help. It's not always fun or easy. But some days or nights helping others makes everything worth it in a sense. I guess it comes down to divine intervention and back to the helping others truly does fill your heart more then anything in this world. Help someone today -Chelle 

Thursday, June 8, 2017

New beginnings

I am SO excited I got my Gastronomy tube in the mail today!!
Isn't it so tiny? (It is smaller in than my current tube but the same size.) yay for that! A G tube is the next step of moving forwards. Scary and exciting. I thought some would like to see what a feeding tube looks like. (Add about two feet to this and another port and that's what my current tube looks like.)  It totally creeps my Dad out. This means no more surgeries for feeding tubes and I can change it all on my own. Growing independence! There is high hopes for the future for me to not have a feeding tube. But there will be no timelines. I am taking it one day at a time. If and when my body is healthy and can tolerate eating fully by mouth. When I am nutritional fully vey safe. Then and only then will I opt to remove feeding tube. Gastropresis You almost took Me but You didn't know how hard I fight back ๐Ÿ’šHere is to new beginnings and moving upwards! Excited -Chelle 

Tuesday, June 6, 2017

6/6/17

I'm attempting to restart my vitamin regime. Surgery has pushed me off the wagon. With Gastropresis taking vitamins  is a tricky task. (Though we struggle with nutrition so we really do need them.) They are rough on the Tummy. A essential trick for vitamins is to get them in a chewable gummy form. These are easier to digest then a pill. Also children's multivitamins are the way to typically go. They are easier to break down and a smaller dose so not to get your tummy too upset. (A smaller dose is better then no dose.) my current regime is children's multivitamin (with DHA as I don't get much of that by eating) the brand Smarty Pants donates profits of sales to women and children who are starving. That's why I bought these at Costco. They got me... After starving myself, I wouldn't wish it on anyone. It is a big deal! So if it helps a child somewhere I am glad to buy them! I also have the B-12, riboflavin, & magnesium for my Neurological issues. Specifically it helps reduce migraines. And I can always tell a huge difference if any of these 3 are stoped in my overall health. (Magnesium Glycinate is a form of magnesium that does not cause GI upsets) my neurologist put me and many of his patients on this two punch kick. He sees improvements and it's not going to harm you really it's a typical vitamin! (Check with your doctors of course though.) So POTSies those 3 are a win! And of course biotin for my brittle hair and nails! I am finally doing so much better with pain and going down on meds. I will finish out antibiotics and hopefully my mouth will heal completely! EDS causes slow healing. I am doing so much better though! My belly will be thankful to rid the antibiotics. They are the worst! I'm ready to start cardio again! It's driving me nuts not being able to do my cardio!! My body is slipping downwards a bit. It is truly amazing how important cardio is to POTS symptoms! I'm starting to move more but my body is icky and I am weak. I also can feel the POTS and the being up is not tolerated. It doesn't take much. This week is resting and working on good nutrition. Also hydration as I was dehydrated multiple times last week. (The worst thing a POTSie can do is dehydrate.) My body is struggling to drink still. It's a daily fight to get what I need in. It's also the week of starting to get this body moving a bit more and awake. But I will get there again. Hopefully next week I can start working towards getting back to my routine! I am missing my routine. But it's good to step away for a minute and see just how much that hard work I put in every day does pay off. Just keep pushing forwards you will get there. One day at a time -Chelle 

Friday, June 2, 2017

2%

followed up with my oral surgeon today (he rocks) though I disagree oral surgery rocks lol... I have an infection that 2% of patients get. Oh yes, 2%. I know that sounds just like a Michelle statistic! Literally. I wish I could win the lottery with this good ole luck I have! More antibiotics, more time and healing. I am feeling the best today I have felt. Pain is so much more in control and going down. The hospitalist kicked me out (I knew) and told my surgeon I was out of pain and wanted to go home. (Well that was not true) my pain was breaking through on IV pain meds at rediculous high doses. So that explains the many days of excruciating pain. I should have been in patient for a few more days. Kinda frusterating but that's corporate medical care via hospitals these days. #awful! I loved the facility so sad the doctor failed. My surgeon was rad though and took good care of me! I'm sure if he was in town things would have been different because he took good care of me when the hospitalist refused to hospitalize me post surgery. (They changed their minds quickly) so more healing!
I do not think I have enough Ibuprofen! Literally this is not very much (wait it is very much but it is a regular amount) but due to having Gastropresis and the need to put it through my feeding tube. I must have it in liquid. Mostly kids take liquid so I take a lot of that liquid for a simple dose of regular for an adult... I just thought it was funny the pharmacist told my Mom, "this sucks she has to have liquids because it takes so much for her to just have a regular dose. It's so much space!" My Mom said she told him, "You should see my house." (True medical supplies are so space consuming!) Just a little chronic reality tid bit for You. Mom has said a lot this past week "She will gladly give me My job back and go back to work" haha. "She doesn't know how I do it." Or "how I keep track of it all." It is a lot to keep track of my treatments and organization of it is crucial. It's so much work to keep it all together and be prepared and stay on track of my care. Daily it's lists and phone calls. Multiple. It's pill calanders and constant dosing. And that's just one part of things. But it's worth it. Today I even put makeup on. not a sign that I am healed or even fine honestly... But a sign of improvements none the less.
(Gosh, I love contouring especially still with the little bits of cheek swelling! I have yellow bruises and We found today why my stinking chin hurts so bad. It's all yellow under it and now moving down my neck a bit. Bruises!) I can look wonderful, heathy and be super sick. I know how to use that concealer! Sometimes You do just suck it up and put your  "face on"! do your hair... It's good for your mindset. Some days it takes all my spoons but mentally it is so good for me. It's good to take care of your mental state living chronic. One thing I truly do NOT miss is not recognizing myself in the mirror. (No I didn't get distorted but I couldn't get out of my bed. I could not get ready for the day. I couldn't simply put my makeup on or do my hair. I couldn't do anything literally.) And I had tubes being shoved in my body and looking back I was so blessed because Heavenly Father gave me the power to be strong minded. I remember praying that I could not be ashamed of my tubes, that I could remember that tubes were good for me, I could remember beauty was on the inside, And That I wouldn't shy away from foods/people. Gastroparesis wasn't what didn't let me get out of bed that was Dysautonomia. But Gagsripqreais added complexity of getting tubes up my nose, in my arm, chest, stomach. He came through for me. Everyday was not easy but looking back He helped me through that with having that mindset I still own. But I didn't feel like me for a long time. I was too ill and Illness will never look like me. I never want to go back to those days and if a little makeup helps that and helps me feel like me... that's all there is to it. It's worth it all.  But looking good and being sick... it's a super power chronically ill brings me none the less.... That's why we rock the Wonder Woman Hat for good measure ๐Ÿ˜‰
Last night we celebrated my wonderful, sweet Grandparent's 60th wedding anniversary! So sweet! (Yes that cake is beautiful! My Grandma was admiring it and I told her,  "I baked it from scratch" jokingly! I always say I bake things from scratch to them when they obviously are store bought haha it's a silly between us. However I do bake well and pretty much only for them. Haha. It takes a lot of energy and effort for a POTSie to bake.)  I have the best grandparents literally! They are full of love always and life would definetly not be the same without them. They mean so much to me I just couldn't explain it if I tried! Too much love to comprehend. Now 60 years of mirage is something to be proud of and we are VERY proud of them❤️ such amazing examples! Mr. & Mrs. Woolford have built amazing lives together and work hard everyday!  Plus, You have a the most amazing redheaded Granddaughter named Michelle! (That's you know the really important part. Haha) Love You Two always and forever! Glad you are mine! -Chelle 

Wednesday, May 31, 2017

Bradycardia (seriously? Is this a joke?)

I'm finally home!! No place like home, truly. I also had a doctors appointment today. My heart rate keeps dropping to the thirties. (Yeah 30s) and after discussion we concluded its my POTS reaction to pain levels being oh so high. A normal bodies response would be a heightened heart rate nope. Mine is to slow. So now my condition that causes high heart rates also is causing low heart rates for me. I am not liking my new scary symptom! Hopefully now that pain is more in control this situation will line itself out! Low heart rate really!? (I can make it better by standing up ๐Ÿ˜‚ broken nervous system). One week down hopefully the next week will go so much easier! Surgery is not easy on a POTSie. Obviously tachycardia to bradycardia. I've missed my Wrecker and I am glad to finally be home with him! He brought me every single one of his toys as I slept today. Haha. He knows when I am sick and he always takes good care of me. 
Goofy dog, I love You!
My cheeks have turned a lovely shade of yellow and are healing (Mom says they look so much better. I have avoided the mirror as a general rule of thumb. It's been a good rule. I think I still look like a chipmunk face.) as long as the pain is better I will be just fine puffy faced or not!! I guess the deep bone pain is not really manageable despite the pain meds. You just have to wait it out. My jaw was pretty traumatized as well. I had a lot going on in that mouth apparently. They changed from nasal intubation to mouth last minute since my nasal cavaty is so small. (Anesthiaologist knew of POTS & didn't want to cause more harm than damage knowing how we are. I also bleed a lot so he had to take that into play.) Tummy is better for sure then it was the other day! GI just placed me on a long hold until after 5 and hung up on me... Classy. Maybe one day they will fix their own mistake and get me a tube. Maybe I need an attorney? I do not understand this. (Now I can't call back until tomorrow).
How many weeks have I been trying to get a G tube? I've lost count...  I will not quit trying. More rest and time. More soreness today. Let's heal!-Chelle 

Saturday, May 27, 2017

Hiding From My Cheeks Update

This is my last surgery update I shall be good after this! However I am going to try harder to post more posts in the future of things besides health related... My mind has been full of thoughts lately as realities have hit of how far this year has come for me. The blessings I have received!
Surgery is rough dudes! Not as happy this day. I think this has been harder on me then my Endometriosis surgery. Pain has been very difficult to control. In fact just barely got it back under control. (It's just not holding) That's been a major fight this surgery for me. Chipmunk Cheeks have only grown larger Haha. The ice has not come off this face since surgery. There has been a lot of sleeping for short periods but the second it hits 3hours my pain is out of control again. I'm hoping tomorrow gets easier. Tummy is of course growing angered with very high doses of pain meds and ibuprofen based pain meds too. Kidneys are not thrilled with Ibuprofen (they never like it) having a feeding tube has been nice to get good nutrients for good healing. But I won't. I can't stop eating my ice cream and things like that. Eventhough I can not chew or hardly get anything in my mouth๐Ÿ˜‚ (I am being over protective of my eating skills. I have worked so hard to attain this year. If you don't use it you loose it. I will not let my stomach have a chance in any way to shut down!) the lady in the cafeteria crossed me twice yesterday. It did not work out for her so well, my nurse had to straighten her out a few times. My feeding tube has been leaking a bit I believe. Meaning it's broken I think. It's been in over two times longer then it should be.... We called GI to keep up the fight to get my G tubes. (they wrote the prescription wrong. Didn't put the tube size down. It's been 6 weeks of trying to get them to fix it... It consists of signing a faxed form home health pharmacy has sent multiple times.) prayers my tube does not bust! Literally. I need that thing! Hoping for more rest. Sleeping is the best but my body has been resistant as always. I don't even have to set an alarm clock my body is up and in pain before the next dose is due. Even when I sleep deep. I don't do things like regular bodies. Just need pain to stay in control. It runs rapidly before the meds do. So things up I'm simply recovering. Lots of love always! (I pray my cheeks never look like this again! This picture cracks me up literally you have to have a sense of humor in life!) ooh they got new heart monitors here and POTSies You will dig them! They are portable and tiny. You are not attached to the wall or any machine it's pocket sized and it also does not beep to you in your room it shows at the nurses station and beeps at them. It's like the best invention ever! Similar to a heart halter monitor....
Thanks to all who have been so supportive and kind to me. It never goes unnoticed! Love-Chelle with the Chipmunk Cheeks ๐Ÿ™ˆ (we have not taken ice off these cheeks. In hopes the swelling starts going down soon!) hiding under ice packs lol 

Thursday, May 25, 2017

Thursday Surgery, last one?


Wisdom teeth surgery went well. I was very impressed with my Surgeon & anesthiaologist. Both were kind and thorough. They took my conditions seriously and into play without freaking out over it. Very blessed. Heavenly Father watched out for me today and gave me many angels here on earth. Also very very clean facility! Never have been to such a clean hospy! Not once have I had to ask for my port to be swabbed or anything. (Wow!) Post surgery was fun for a few minutes (I guess I sang Miranda Lambert songs. Oh boy! But I truly am happy I woke up happy... Those poor surgical nurses's ears! Bless their hearts.) Too soon though the numbness wore off and ran my good fun! I can not have Epinephrine due to my POTS.... my pain was out of control for the rest of the day from that point on. I was so blessed with the best nurse ever! She was so kind and helped to do everything She possibly could to make me feel better. Overall good things happened today but the pain was not such a fun thing to have out of control. Bless the lady in the bed next to me in recovery we were on the same path... We hurt at the same times and our levels followed each other even when they managed to get it better for Minute or so here and there before we knew it, we both were hurting all over again. (Kinda silly, our poor sweet busy nurse though! My heart went out to her...So thankful for that sweet nurse. Kindness and doing your job correctly goes so far. So grateful for the real nurses out there!!)  This Evening has been much better. I got to my room and changed  back into my Wonder Woman T-shirt. (Maybe those super powers wore off on Me?) This day has been spend with lots and lots of ice on my chipmunk cheekies. 
They were concerned about the nerves on the lower side of my mouth being damaged but I have been hurting in those spots all day with no numbness. Which is a blessing because those nerves can have permanent damage... Blessings! This surgery to get My Wisdom Teeth out was not an elective surgery. They were impacted and had to be removed ASAP. It was a legit problem. There were no other options or choices. I should not need feeding tube surgery leaving me hopefully sugery free for a long long while!! That would highly decrease surgery for me. Mom was by my side as always! I sure am lucky to have such a supportive Mother in My life! She doesn't even know how special and amazing she truly is! Love you Mom!! Through all the Ups and Downs! Oh and Deers!
My cheeks though are hilarious! Currently up waiting on regular night time medications... The hospitalitst does not want to give me my regular potassium. (That I take every single day for a year now... prescription via my nephrologist? Otherwise it tanks and I truly don't know why He thinks I am dangerously making my Potassium high in his head. It's not high we monitor it always. It goes Low. Wish me luck here we don't want critical levels of low potassium to get our daily doses. Always a fight over stupid things no matter where I am. Just do what works for me... My doctors that know my case clearly  know what they are doing!) I am always explaining myself and it is tiring. There are More POTS patients then M.S. And just as many as Parkinson's... It's not a rare disease. It's rarely known of... Which makes the little things for me hard and sometimes dangerous. (Just a little Dysatuonomia awareness folks). I am so blessed today thanks for all the prayers! I am thankful! When I was walking my laps around the hall, My heart was so fully of gratitude not even a year ago I couldn't have done that especially post surgery. I have gained so much. I am improved. Not cured but improved. It's these little moments that tap on my heart strings and bring me joy in life. May everyone have Wonder Woman Stamina this weekend feeling as healthy as possible. Hope hearts are full of joy and peace! Xo- The Chipmunk Chelle (laugh always, even when you can't smile because you had oral surgery lol)

Monday, May 22, 2017

Wisdom

I am so smart I thought I could afford to get some of my wisdom removed... My Wisdom Teeth are impacted so I will be getting them out this Thursday. It's surgery and with surgery for me comes lots of risks and of course I could go out of what little remission I have gained. (If you would even refer to it as a remission)  I could loose every improvement along with my ability to eat by mouth. Hence why I through in a photo of me eating! It's such a blessing! Eat and be merry! However Gastroparesis is  part the the territory I tread with Dysautonomia. Every thing can change the course of disease for me. Lots of faith and prayers because Heavenly Father has a Plan for me. Let's get these suckers out! (They hurt) I also had a big scare last week with my port, they thought I had a blood clot by it. The  Emergency Department Doctor refused to treat me when my doctor called them. Even when that doctor knew how life threatening it was. All I can say is Shame on that doctor! I am glad to announce they found no clot but will be testing my port further. After two days of no sleep and lots of worry! (Very disappointed in the negligence of the ER here)  I also have lots of testing coming up on my neck. EDS is causing hypermobility and we will eventually do Physical Therapy in hopes to help the neck. GI says after recovery I can get my G tube and say bye bye to J tube. Moving forwards getting this daily pain away from the wisdom teeth... Hope, prayers, leaning on faith -Chelle 

Saturday, April 29, 2017

One Year & A Day! (Final tube decision)

A memory crept up on my timeline today...
What a difference one year can make! I was so sick and I never found help. I also never found answers. Now we think it is POTS that causes these fevers. As I still get them sometimes. That was a month long fever that wouldn't break. I also was on immuno suppressants so that meant thought the fever wasn't appearing super high in my case it was super high. I had my port all the time for IV fluids and j feeds... I had lichen planus all over my face. My immune a system was attacking me for sure. And was still just so sickly! I had been in over 4 hospitals and hospitalized. No answers.
No help. A lot of judgement because though I was clearly sick and I had a fever as well, that would not break... But all the tests were fine. I was sick and I was afraid. The healthcare system definelty failed me Multiple times at this point! This picture I hate looking at because I remember it! And I just don't look well... one Year Later...YESTERDAY my GI was on cloud 9 and He is very amazed with my improvements over the past 6 months. It's truly miraculous and I do look so much better! The whole office buzzed lol (I've never been seen with makeup nor hair there. Just emergencies/hospitalizations and surgeries) I am keeping the CURRENT tube I have in. (GJ) due to wisdom teeth issues. Oh yes they have attacked me and I'm getting them out ASAP but of course I have to do it in hospital and it's complicated to get set up! And my Endometrosis needs more weeks to attempt to improve with treatments. Surgery can't fix it all anymore it's now complex & I get to fight it again with treatments. So in the event that the current tube comes out because it's way past its life expectancy and can fall apart (like last year remember that?) in that case he has given me 2 Mic Key Gastric tubes that I will replace at home on my own and I will go to a G tube. Then we will see what time brings and he thinks I will be tubeless in time but also thinks we don't want ANY set backs like moving too fast and agreed as much as he said he wanted to just yank the current tube, I (pit of excitement) I did need a tube to bumper my nutrition still. So to sum this up I will be going to A straight Gastric tube AKA stomach tube. So we are loosing the small intestine tube that bypassed the stomach completely. Truly major blessing here. I am SO grateful and blessed! IT ALSO MEANS NO MORE RISKY SURGERY FOR ME every few months ๐Ÿ˜Š (J tubes have to be done under surgery because they have to be guided into the small intestine.) so no tube surgery, which will only allow my body to become stronger and it will be less risks for my Dysautonomia to flare severely. (Andy type of surgery, sickness, pain will cause a flare that could be permanent and put me back in bed daily like I have been for the past years. But I have a strong faith though I won't be cured, I will be so much better and functional. That's what God told me that's what I will remember. I know that doesn't mean I will be perfectly fine. I just had a little flare up last night but I'm feeling better today. I also know better and my specialist how my body works in my case and how to help it win. Faith not Fears)
moving forward!! trials to triumphs. Love love You all! -Chelle 

Friday, April 21, 2017

EDS?!

I've had a long day of appointments... (It's that time again ten hundred specialists to see) But I still got to laugh at this sign! "Healing is in the air." I stood there for a minute just to make sure! Lol Only at a Hospital will You find such a sign! P.S don't smoke! It's bad for You! No no! 
We Got stuck on the freeway (they ended up closing it and kicking us off after thirty minutes, prayers for the people involved. Must have been very bad to close down the freeway!) I almost missed my  second appointment #yikes! I get to take a week break from those treatments and start again because well it's tough and my doctor feels a break is needed. So I am taking  her up on My break and hopefully some horrible pain will go away for a few days. (I get a 7 day break) The treatment long term should have a really good pay off. It's simply getting there. Then my Neuro went well. He isn't sure of my hand but does think I could have a pinched nerve in my neck. He says let's wait and see what nerve conduction study shows and we will go from there. We may do another MRI (yay my millionth. I should be glowing from all the radiation I have had)  When I asked,  "If that was the issue what we would do?" he said, "the less we possibly can in your case. You finally have life to You we will not do anything to mess that up." He also reminded me how careful I must be to not get sick in anyway because of the possibility to change course of My wellness with Dysatuonomia. (Good idea) I just want to put a reminder out to everyone that if you are sick... Seriously stay home! So many people are chronically ill and a cold or the flu is a really big life changing event for us! And look at the photo above I look perfectly healthy and fine. You'd never know how fragile my future health truly is by looking at me! He examined my neck and I have been Re-diagnosed with EDS A.K.A Elhers Danlos Syndrome. I was diagnosed originally when I was diagnosed with POTS but current neurologist undiagnosed me when I started seeing him. I suppose I don't have so much going on now that other things are going to be more obvious and prevail. EDS clusters with POTS. I was skeptic I could have EDS so I am not super surprised. However I really don't know anything about it besides it is a collagen disorder. It causes hyper extension of joints and other issues but I know very little.(that's the part I don't like not knowing and having my answers to my questions.)   So um, well I honestly just don't know what to think yet. He said I've been living with it for a while so I know what it's like... (I guess I have research to do) He is putting me into physical therapy for my neck as well but he isn't sure when just because I am already in therapy and he wants to look it out more. I also am going back to follow with rheumatology to see if they can yet again figure out my untied ends to my tests reaults of Sjรถgren's Syndrome. I put this all in the Lord's hands "Come What may and love it!" Faith. All is well minus some little things! That's the way we like it! Well! -Chelle 

Monday, April 17, 2017

6 Months

Today marks 6 whole months without ANY ER visits or hospital stays!!! And no actual vomiting!! And by no actual vomiting... I mean no wretching my guts out for hours on end making my throat, esophagus, nose bleed while breaking blood vessels in my face. Those vicious cycles are the worst. I make doctors panic. With no releif on all we can give. Not fits! (Nausea is life but hey I keep things in we are good)  What?! I'm blessed! Here's to another 6 months (fingers crossed) well I most likely will have a procedure for feeding tube soon but hey that's a short hospy stay for procedure! (Well maybe I shouldn't say that i aspirated during my last tube surgery and got phnemonia that three ER visits never could find... Then I found out a month later I had phnemonia from my nephrologist by accident. She got the wrong records! Boy was she upset!! No one ever told me that I aspirated during surgery!)  Hope ALL had a healthy Happy Easter Sunday! So thankful for my savior beyond measure-Chelle 

Wednesday, April 12, 2017

What You Aren't as Cool as Me?

What,You can not do tricks while typing?
I can eat hands free, a fully rounded meal folks! (Travels today left it hard to get all the nutrients in) but hey we bolus! I am so much better with my GP! I am eating well still and managing well. I see GI in two weeks to go over tube options. I'm a picky Tubie and I know what makes sense, oh and what I want! A G tube. I'm not ready to have no tube. That's out of the question for today. But I'm ready to step up to a G tube... So I will feed into the stomach and not the small intestine which has been bypassing my stomach completely all along the Tubie days. Making progress! I do a lot of mushy liquids. And I'm always feeling like I'm tweeting my diet to get what is needed in better. It's easy to lean on empty calories but it's not good for a GPer to intake empty calories we can't afford to loose the nutrients. So I am trying even harder to squeeze nutrition in me daily. Orgain is my game. And I do still have Gastroparesis it simply is being more manageable at the time. (I know there has been a lot of confusion on that. I am improved but not cured. I can prove it because I just found food in my stomach from 6plus hours ago. And your stomach should fully empty in two hours. Could be why potassium is dipping because nutrition dies off after spending so much time sitting in the stomach where food is not absorbed.) since I have neurological GP it can improve and also get worse so we pray and do the best we can... And enjoy the good times with faith they will last๐Ÿ’• The good times like today, eating at our "place".
I've been seeking the treatments of all kinds of kinds for many years now at St Joes. (And a bunch of other places but currently we have been at St joes for my Endometrosis & pelvis. If You are newer I don't speak much but my pelvis was a trauma case injury due to my disease being so bad and untreated. My body turned freaked out So injury occurred  and I Was in the same shape as someone crushed in a rollover accident minus broken bones. I had three years of physical therapy. And I am back into therapy again since my last surgery irritated the injury. #wompwomp. It will be better again though that's the good part! My Endometrosis had also gotten more severe they found in my last surgery making it harder to treat. It's treatable just more pain for me. I have the best doctor in the world no joke! and now one for my hand too. Anyways!  We always would go to the Park Place Deli. During the good, the bad, and the ugly times. We have to eat. And sometimes there are windows of time to kill... We like our place because it's cool and it reminds us of New York! Today we sat outside and I ate there for the first time in years. For a few years I couldn't eat there just watch. (But I still very much enjoyed the atmosphere) That place is near to my heart. It's dressed up some rough times for me. It's been a place of rest and distraction in some trenches of my battles. We just stumbled across it because the Hospital Front Desk lady gave us a list of places to eat near by one day... when we were newbies... And we were starving! It's really an amazing feeling to be able to eat there again...it feels so blessed in my heart. Today I saw my new hand doc/surgeon and I do NOT have to have surgery because my ganglion cyst has gone away (all while waiting to see a new doc, the old doc did not send my records to me after weeks and therefore I had to get new X rays... That showed my cyst is gone!) but the bad news is I have to have a nerve study on my neck because something seems wrong with my hand still. He bent and messed with my hand and wrist for a long while. (A good doc) He even cared that I fractured it once in my Dance days but he looked at imaging and that part looks perfect (more good news) I have some numbness and pain...  but I think it could just be my Dysautonomia. This doc was extremely thorough and thinks their is more to the story. (Which does follow all my other Heath issues). My pelvis surgeon sent me to him and he operated on her. So I figured if he could operate on one of the countries best surgeons ... Well, he could take care of this handful! He was not afraid of me. He also was really nice and answered my kagillion questions I always have. (He showed his students a few things so of course I needed to know what was wrong with me that we were showing others.... Lol. He graciously explained I have very odd weaknesses in places. I left it at that assuming it's Neuro related. Or Michelle related.) He was very good. I felt safe... I was thrilled to not have the need for surgery! But then about ten minutes after I left, I realized I probably have some weirdo nerve issue that will not be fixable and a pain in the neck! (Nice pun) we will do the testing and I will return for results. We will go from there. Luckily I see my Neurologist next week! I am intrigued on his opinion on all of this... I have been complaining of neck issues for a year or longer now. It's been brushed off. It could just be weaknesses. (Now this info is Dr Me.) My body has been fully deconditioned and I have reconditioned it but... You know maybe the neck didn't get the TLC it deserves. But I am having a hard time holding my head up. I have been feeling unstable in my neck. It also seems to be bending more then it should be able to. Maybe I'm loosing my marbles but I'm typically right when I think something is off... And continues to stay off. Hopefully it will all be easy to find some answers  and easy fixes. If not I will trudge along like always. One day at a time. "Im not medically complicated, I'm medically interesting" potassium I have upped and we will see what my labs show. Luckily the pills are allowed but I may not be able to tolerate them they warned. But I will.  I feel like things have been falling apart because I've been in a lot of pain and I've gotten to see doctors this week and my mind is at ease again and I'm feeling calmer. I have fallen backwards a little bit but it's temporal and not my Dysautonomia. I just have a lot of medical conditions that like to annoy me. Getting all my ducks back in a row again.  I just felt like updating everyone a good update will the info. Lots of love-Chelle 

Thursday, March 30, 2017

Invisible Pain Day Tasks

Today was rough around the edges but by looking at me you would never have known. I had painsomnia last night and probably fell asleep finally around 2 am. I woke up as late as possible this morning knowing I had a full afternoon. My Endometrosis/Adenomyosis  pain level is high. Too high. (I hate those pain charts. In a scale of one to ten they ask... My responses to these questions are normally 50 or 100) but I wanted to get dressed and do my hair and feel semi human despite the pain. So I did it. I was going to hurt no matter what I did today. I also could not take any pain meds because I had to drive and obviously you can't do both... So I trudged through! I went and had my labs drawn out of my port. 
We smile and give thumbs up when we get needles in our chest ๐Ÿ‘ Gotta check those electrolyte levels with these POTSie kidneys I own... I then trudged forward to Walmart (cover my eyes) I hate going to Walmart. It's always busy... I park Handicapped and there is always someone who has something to say about it! (I can hear you talking ever so purposefully loud two steps behind me. No, I am not lazy, nor am I borrowing someone else's handicap sticker)  Or they just glare at me... I get that I don't look sick... I truly do but in all honesty We hate being the center of a judge mental skeptical! Younge people get sick too. Most disabitlies are considered to be invisible disabilities which means, You can not tell by looking at the person. That person looks fine on the outside. But I had to get Orgain! And it's the only place I can find it... And I basically live off it. So to Walmart in between appointments I went.
I ended up having to climb in my cart to get my Orgain as they place it on the top shelf. I always look for a helper but they are never findable when I am buying Orgain lol so I improvised. I shouldn't be climbing in my cart. I know. But I got it and felt rather like Wonder Woman. With severe tachycardia.  (I'm contemplating asking a manager if they could move it on the shelf since I am most likely the main buyer lol)  I then got some more essentials... Ginger ale, juice, canned mandarin oranges, & bananas. That's when I realized I basically must be having a rough week to have a cart full of liquids. But I'm not sad or mad. In fact I am so grateful even when I basically go through phases of full liquid diets. It's all good! Like truly my heart is full. I eat by mouth. Some adjustments are made at times but I have not just overcome this challenge I have learned how to balance liquid nutrition. I also have been really feeling like finding and trailing more foods to eat. Especially drinks/smoothies/blendederized foods. Gastroparesis is truly a condition that weens and wanes You simply roll with it and you just ride the tide. Also going to the store to get some groceries made me feel normal again! (Like the little things folks) I also had to get gas in my car for my trip to therapy tomorrow and go to the pharmacy I think for the 3rd time this week! All with very high pain. My days are filled with a lot of medical things. And these things most people don't know or see. I have an invisible full time job taking care of my body. It's true I spent the whole day Monday on the phone all for medical. My GI did contact me back (well I contacted them back they never called me back) yesterday, and I will see him the end of April to go over options... I don't know what my options are with him. (I kinda question if he believes me because he didn't the last time I saw him) but I know I am the boss and I will do what I think is the best for me. (Which I think I already have that plan figured out) I am very concerned my current feeding tube is going to fall out like my old one did. I just keep having this instinctive feeling about it... I don't like that! I have been trying to get a g tube to have on hand at home for just incase...(tubes wear out. They have to be replaced regularly)  Because if I loose a tube I have to go to pheonix and then my stoma would close up and I'd need to have it recut. Which would mean surgery. Most people have G tubes on hand for this reason. People that only have G tubes also can change out their own tubes at home. Unlike a J tube that has to be surgically placed. I wish they would order it and get it to me because my GI agreed to this 6 months ago. But he is "busy" now and that's his answer for everything "I'm busy".  Hey I am busy too!! So this situation makes me nervous! If I do loose this tube and don't have a back up plan and get pushed backwards. It won't be pretty. I don't like fighting with doctors or being forceful to make them do what they say. Bottom line this tube is worn and needs to be replaced... Anyways just an update on the GI tube situation... Time will tell all.
In the meantime I will enjoy what I can and be happy. Bask in the sunshine! Despite the wind -Chelle 

Thursday, March 23, 2017

Gastroparesis choices?

Though its snowy and rainy today the past few weeks have been gorgeous! And this girl has been tolerating the heat! )you guys I couldn't even walk from the car into a building without getting heatstroke the past two years due to Dysautonomia! (Praying it lasts and I can enjoy the sunshine again like I used to) here are some of my good days away week ๐Ÿ’• I am so appreciative MY good days! The days I never thought I'd see again in this lifetime!! I am so blessed beyond measure... 
&
& This silly Dog and I 
 
Gastroparesis is having a kitchen full of food, feeling starving, & having no appetite at all... All at the same time. I started this hungry thing last night but nothing suffices. So I keep sipping Orgain. I had breakfast but I don't think it's absorbing fast enough. It seems to just be sitting in my stomach. It's always such a strange thing when you are starving but your body doesn't really want anything. Yet it wants food because it's telling you it's hungry. And then you realize your in the middle of a bodily fight.  Either way I loose. If I eat too much and give into the hunger, I will get pretty sick. If I totally ignore it and give into the lack of appetite I loose nutrition... That I clearly need. Hey body? don't you see my efforts today? Nope? These are the days a feeding Tubie isn't so bad... I can have formula and makeup the difference. With what is going on I am going to be talking to my GI. I want to have a Gastric mic-key button on hand. April is 6months of having my current tube. (G&J) At 6months my last tube literally broke and fell out. I had to drop everything and be taken 5hours away to a hospital equipped for me. I was hospitalized because I could not take any meds or eat by mouth then... I also took the whole summer to regain feeds and I got very weak. So the time has come for decisions. I've been thinking on this for a very long time & I think I have made it. Going to see if we can go from a GJ to just a G tube since I still use formula daily into my belly. I keep pushing forwards. I will get there. I've already made major strides. You guys it is truly miracles. I credit Heavenly Father. He told me he would make me better and He sure has stuck by that! He did too say I would not be cured & I am not. But what I am is very grateful!! Just what 7 months ago... I was drinking though my heart via IV fluids/Port daily. My J feeds were so low... And now I eat food by mouth and use a can of formula to supplement (but it goes into my belly) that's so huge! The formula is full nutrition that I struggle to get like veggies and fruits. I can't digest them. So I have to supplement those nutrients. We are moving towards just Orgain as its a replacement. But I am still formula weening.  I think the best option is to move to the G tube because it gets used. The j hardly gets used and I think it's time to take the training wheels off... Plus if I have a G tube on hand I can replace it on my own. J tubes have to be done under surgery as they go into the small intestine. So if this GJ I currently have breaks (the g tube would be a great backup plan that shouldn't push me backwards at all) and the G tube leaves me with a tube and keeps my stoma open if I need to return to a GJ in the future.(stomas close within hours) I think some time with a G tube is a good solid plan. I put the calls into my GI and we will see if He agrees. That was a big deal for me to make that call today. A very big move. Moving forward in faith not fear! I have some anxieties. I also scheduled to see another hand surgeon today (fingers crossed this one is the one. Surgery is so tiny My health conditions not so tiny) I'm excited to keep moving forwards. Prayers, faith, hope, & spunk will get you through -Chelle