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 Sjögren'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 😉 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 🇺🇸 -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) 😉 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 💪
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 😉😉) 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 😉)  I simply just enjoyed My day today and I felt like Chelle again 🙌 (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 😂 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 Sjögren's syndrome we must determine if I have Sjögren'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 it💪 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