We are OVER!

Me and my sign had a bit of a fall out the other day. If you have been around you know this sign has significant meaning in my life, spiritually. The quote is from a general conference talk. (https://m.youtube.com/watch?v=q_JVIBKbbRs) A conference talk that answered my prayers years ago in the depths of sickness disparity. When life got too hard to handle, this sign lifted me up. The other day, after the worst worry of my life had consumed me. I was in bed worried sick. This sign sits in my dresser and these days I've spent a lot of time staring at it from my bed, with being ill. The emotions had built up and this sign was mocking me. I tell you this sign was in front of my face mocking me and I was not going to have it any more. I dispised this thing. So, in my moment of pain and anger... I took the sign and said, "we are through. You and me we are over!" And I took him and I walked outside straight to the garbage bins and I threw him away. This sign no longer represented my current circumstances. This time I could not "come what may and love it." It was too much to bear. For the first time ever, I was truly thoroughly defeated by my body. The sick was too much. It felt good to throw out the sign. I taugh it! Don't mess with me and do NOT tell me what to do! I stormed back into the house thinking I had fixed the problem.                                             Well, I calmed down, came back to my senses, and realized I had made a mistake. This sign is not mocking me, and it's not bringing me bad luck. It is definetly not telling me what to do. Ha. It is God's way of telling me it will all be okay. Just like I learned years ago, "come what may and love it." I don't always know what's ahead of me. I am walking blindly into a storm. It may be a burden so large, I may feel weak, but Heavenly Father is there to help me carry the load. I missed my sign before the end of the day. I ended up half way in the garbage bin to retrieve my old friend. Cleaned him back up and put him back home. It's okay to hurt but don't unpack and live there. Cry it out and resoften your heart and, let Heavenly Father lift you and your heavy burdens up. Even if it's a twig of faith, use it. Heavenly Father has been helping ease my mental pain since. It comes in waves but I'm not drowning because, my lifeguard walks on water. -Chelle 

ALS Scare.

I had a BIG scare last week. One of my Doctors thought I had ALS. I truly thought I was going to die. (I kept thinking; "if the disease didn't get me the anxiety of thinking I was dying would have".) I do have many new worsening neurological symptoms. They range from mild to very severe. They are scary looking for sure. They definetly can alarm myself at times. I'm having difficulties with small motor skills, talking, writing, severe vision. I have facial drooping and tremmors. I have poor gait. I am tremmoring severely. It looks at times like I've had a stroke. (Basically neurologically I'm a hot mess.) this is all accompanied by fevers. I am blessed and my neurologist has ruled out ALS. He is focused on new testing for autoimmune-neurological conditions. He did not specify which ones. We are taking this one step at a time. He has upped my IVIG treatments as I have been responding positively to them. If I ever get answers, I'll let you know and add more detail. You never know who it could help. It could be a very severe case of Mast Cell Dysfunction that is causing severe wide spread neurological symptoms. Mast cells can cause these things. So we are treating the Mast Cell Dysfunction harder. Neuro seems to have high hopes for remission, but it's gonna take finding the right treatments again.  I wrote this last week, when I was scared more then I've ever been before. The whole situation didn't make sense spiritually with where I am, which gave me comfort. I'm getting married, (said yes to the dress today) finished pathways program last week, and I'm trying this Bloggerlife again. It didn't add up with what promotings I have been given but it was still a challenge. I am SO blessed. It was a long week and I know Heavenly Father was with me many times. Prior to my neurology appointment, I had a feeling I needed to say a prayer. So I told Mom, that I wanted to pray again. I looked down to cross my arms to pray, andsure  enough two flecks of glitter on each side of my shirt. So my angels were with me. Luckily, the appointment went well for me and my anxiety of having a terminal disease was eased. Though, I am still dealing with the aftermath of it all in reality. Last week I wrote this, Because I was trying to have faith within the storm. Last week's post: I'm really scared. More than I've ever been in my life medically. This hasn't happened before. I had a blessing and it gave me peace. The anxiety still waves however, when I pray, I get more peace. My family assures me it can't be. I'm still scared. I have great faith, but my heart is overwhelmed. I woke up this morning, and then remembered my current reality. I've brushed death before but this is different. Heavenly Father is the ONLY one who can help me now. The song "He will lift you heavy load and carry you" plays through my head. And "perfect peace". I can feel Heavenly Father speaking to me. I'm resting on him. I'm walking forward in faith. Scared, fully blindly, I walk in faith. I have been given an amazing partner in my life. He is perfect. We giggle and laugh. We joke and we smile, even in the worst of times. We sit in the hospital testing center, and "critic" the art on the walls. Just to be silly and take our minds off things. But he is good, so good to me. He has full faith I don't have this. For me, I'm shaking in fear, but walking in faith. Trust in God. He hears you. He knows you. No matter how scared you may feel. He is there for you. Right now, it is one minute at a time. My scriptures brought me help last night, reading in D&C 8:2 "Yea, behold, I will tell you in your mind and in your heart, by the Holy Ghost, which shall come upon you and which shall be come upon you and which shall dwell in your heart." (It was a sticky note from above, and a reminder that Heavenly Father is true, I believe in him, I know him, and now I have to trust in him. He loves me and will guide me through. ) -Chelle 

Today Embarks a New Beggining

Side note: I have never been ashamed or embarrassed of my feeding tube. And I will never be! If someone doesn't like your feeding tube A.K.A lifeline they can just get over it! Be proud💕

Having a feeding tube, almost dying, (being saved by TPN to the day. God is good), going back into full remission, then getting my feeding tube removed, to relapse a year later, and to end up getting another feeding tube... I have been fighting it. I did not even realize it.  I have been hoping I could go back to a G tube since day one. And I still think that is a very possible option. I can eat by mouth but it's a struggle. I can't drink enough so the tube stays. Then I flare up in the middle of the night and I have to attempt to pull the food I digested 9 hours prior and avoid throwing up as much as possible. While I wait for the nausea to subside. Then I went to sleep and I haven't eaten today. This flareup opened my eyes. I have not been grateful for this blessing, that a feeding tube is to my life. And that changes now. My stomach hurts and my body doesn't even really tolerate J feeds of water. My body flares still and that's the way it is. Today something in my brain clicked. Why am I fighting my feeding tube? I had full exceptance of this tube for years. Why this time? I rocked this thing then full force, I had moxy.  What was the difference this time? I suppose, because I worked so hard to eat on my own... I never planned on getting it out prior. I didn't think it was a possibility then. Now l know with Neurological  Gastroparesis I can improve and go into remission. But with the term "remission" that just means it's good for now... It can always come back. Otherwise it would be called, "cured". And that's the way the cookie crumbles. So I may as well accept it like before, and embrace this feeding tube!  I know for a fact there is nothing to not love about a feeding tube! It hydrates me daily, it provided nutritional support, it saves me in flares ups from vomiting violently. I would not have gotten over this flare up in two days time without the tube. I would have needed IV fluids, a trip to the ER, and my body would have gotten even more down. It would have wrecked havoc on my Dysautonomia. Who knows how long I would have been down for without the feeding tube. The truth is I love my tube and what it does for my health. But I struggled this time because I fell out of remission. And a lot of blood sweat and tears went into me getting to the point of remission. I will never quit fighting my Gastroparesis. I will eat as much as I can. So now We are back  on the Fast food diet! It has a lot of pros... You can eat while virtually doing almost anything, anytime, and any where. Even in your sleep. You get very  well measured nutrition. (That's way harder to attain in a diet by eating solid food.) I don't have to cook if I don't want to cook. No dirty dishes. See there is always something good in the messy life we live. The best is yet to come. This tube is amazing and a blessing! If you have a feeding tube #rockit. I have peace in my heart. No more fighting life just embracing it fully, the way Heavenly Father intended, one day at a time-Chelle 

I Told Myself I Would.

I told myself I would post one post a week. That's been a bit more challenging then I anticipated. Life is very busy right now. I'm almost done with school, meaning finals are being prepared. I am planning a wedding. I am very much dealing with chronic fatigue and health issues. I feel like my strength is totally gone, spending most of my time in bed I am deconditioned. Something I swore would never happen to me, again. Yet somehow it did. I believe highly in excersice in POTS. But there are time when my POTS wins, I won't lie. I have relapsed and I have new scary unresolved symptoms. I have had a severely hard time getting proper medical care. I've been pretty neglected by some* of my important caregivers. It was all high fives and praise until my relapse hit. Basically most of my doctors have ran away since I relapsed. (They all knew a relapse could happen.) That's been SUPER hard on me. I would say the most hard thing is this feeling. I trusted my caregivers and those few have left me in hard times. I won't go into detail but it has been very rough on me. It has effected my health negatively as well. I have very treatable symptoms not being treated currently due to pure negligence of one of my specialist. It has been very draining of my time and energy to attempt to get medical care lately. I spend many hours in the phone typically every single day. Even putting in that kind of time, I'm still being literally ignored. My doctor isn't looking at what's wrong, or really listening. The Doc is more focused on how hard it's going to be to figure t out. And that's where things have ended here. On top of that you know, I have a lot of supplies to keep track of as well. If you're chronically ill and debilitated you understand how sometimes medical care alone consists of overwhelming stress. We work every day to give our bodies what normal bodies should do without even thinking. I do things to help "fix". autonomic bodily functions, you will never think about. Did I mention I was tired? Lol. I will be happy to complete the Pathways Program through BYUI. If you are a member of the church any adult age, it's worth it. It is not easy as some people will likely portray. Typically, people who have never done the program will be the ones telling you how easy it is. lol. I assure you it takes time, work, and effort... But it is worth it! I feel very blessed and grateful! I have had a rough year but I assure you God all along told me I wouldn't be cured, but that I would function again. I would have a life. And sure enough, when I open my eyes, and look up, I am completing the pathways program and I am getting married! That's two normal people things. I remember those days of humility. I was SO crushed by life of being disabled and so sick. I didn't know if I would live through this. I wondered how I would EVER be something resembling normal again. I would miss my old self and cringe at the new. I would waiver with Heavenly Father to "please just let me be normal again." "I will be happy with the simple life," I would tell him. I was crushed, broken hearted, and I did not know how things would work out. But I had hope. I shared my story and did what God told  me to do. Somehow under all of it, I still hoped and had faith. Some days more then others. But I am living proof that you can find love and happiness in this world! You are so much more than your body! Your body's limitations are not you! You may have to live a bit differently, but the people who love you, will only keep loving you. I know what it's like to wish for normalcy after a heart wreching year.(or seven) but you keep doing the best you can in faith, and it will all work out. Maybe, not how you planned it, but the plan God has in store for you. Remember he has the bigger picture. But good things are always going to be placed in our lives, it merely depends on how we look at things. I believe if God takes something good away in our lives it is because he is replacing it with something even better. Take heart, the best is yet to come! Sincerely, -Chelle 

Simple Hope

Tonight will be simple, a message of hope to all. Especially the chronic or disabled. Never say never, never throw in the towel, & most importantly never give up hope. Because just yesterday, I sat in the living room of my future house thinking "I did it." (Almost) I am getting married and I get to have a family of my own. The only thing I truly care about in the world is family, it's the anchor of my soul. And it crushed me to think I wouldn't have one due to chronic debilitating health issues. I never thought anyone would ever love me let alone love me (with all my flaws and illnesses) enough to marry me. In my head it was out of the cards, and it hurt, daily. I would miss my old self and wonder what my life "would have been like" repeatedly. I would waiver with God to just give me a "normal" life. I would be content with the basic life and necessities. I just wanted a family of my own. I begged and pleaded. Because in my head my life was over in many ways. It was me, myself, & I. The storm left nothing resembling my old self. And then before I knew it, the one fell into my life out of NOWHERE. Flaws and all. It's a crazy life. But I promise someone will love you. You can have the happy ever after even if you're sick or disabled. (Things all my family and loved ones told me I was capable of... But I was too stubborn to believe.) So believe those friends and family members who say, when the time is right, Mr. Right will be there!  I don't have all the answers to life or anyone's love life's, & I won't pretend to but the message is... Dream, hope, and have faith that someone special is out there and you can have a family. No matter what you've been through  or where you've been. And no matter how alone you feel rely on your Heavenly Father because he ALWAYS loved you & will always be there for you. He has a plan for you eternal. Always, always, dream. Xo -Chelle 

Confessions of Disability.

Something interesting has happened to me this year. (This has happened to me in the past as well.) I no longer go anywhere unattended. I stay home alone often yet, I never leave the house alone... And I have a HUGE confession, it's completely and totally embarrassing to me. I used to be social, outgoing, and I took on the world. I now at 25 years old, am engaged but I can't leave my house alone? That's when I realized that I can leave my house alone. I don't always need another person with me... But it isn't the safest nor always the most effective way to get tasks completed outside of the home for me. When you are disabled, no matter how hard you try. And you know you try hard not to... We tend to compare ourselves to others in the world. (Or at least I do. I admit it.) And the sicker I get the more I sink my feet in and get stubborn. I then compare myself even more to others. Then of course I rapidly spiral into an anxious-stress ball, looser, weeping, burden. I have times where I really struggle with wanting to be "normal" again. I miss the old me. And I have a hard time navigating the meter that measures if I am failing at life. Am I doing good enough? I can't hardly keep up with half of what it takes to survive and sustain life. I simply do not have the energy. My body uses it all fighting day in and day out the many illnesses I wear. Some days, or weeks... Though I love makeup dearly and do enjoy getting dolled up, I have to skip the routine. Some days I just throw my hair up in a messy bun or forfit the curls. This makes me feel lazy or ugly. Sometimes like a coward and I remember the girl who gleamingly would jump out of bed very early in the mornings  with enhusiasm and excitement to put her makeup on. Now the same girl turned woman... Can barely make it out of bed? And if she is lucky she will complete her daily tasks that most people will never have to even consider doing. (Calling doctors/pharmacies/insurance/home-health. Organizing medications and medical supplies strategically. Making sure she has what's needed for survival for the next few days. Once these tasks are completed that take several hours per day, then she can move onto "normal" or "regular" tasks. Often times, she looses her energy and has to stop and rest. Rest is also different, it takes more rest for a lower pay off. I have to plan strategically what I can attend or can not simply by the guessing game of the energy surplus, that I may or may not have. And don't double book. No we can not attend, or do two things two days in a row. We are lucky to get one thing in a day done. You see I realized I wasn't being fair by comparing myself because, as a chronically ill disabled woman... I work hard. I may not put in a 9-5 job but I most certainly put in all my energy at all hours into functioning at a lower rate. I strategize so I can appear okay on the outside no matter how many symptoms are ravishing my  insides, or how mentally and physically drained I may be. I am pushing the smile because I only have one life too. And I want to be with my  loved ones and family. I want to share moments and memories. I want to forget about what's happening in my body and I want to serve others too. I miss the days when I could offer to help someone. Without a thought I could volunteer my time and services. I could help another, now it seems as if I'm always only asking for help and I rarely get to return the favors. I feel like a child often trapped in an adult life. But I know that comparing myself to others around me is simply not fair. Because I do work hard. I do try and I may need help but there is a LOT and I mean a lot that I do complete with absolutely no help. Ever. So yeah being disabled is hard. People judge you for not working and providing for your family or they call you a millennial (even though you're only living at home due to being disabled and choosing to pay your medical debts and bills versus having normalcy.) maybe we don't work. Maybe we can't leave the house alone. Maybe I do get anxiety because we forgot how to have a normal conversation with a normal person. I don't know what to ask about your job, kids, life... It's like living on Mars. When people ask how I am or what I am up to, it involves a small lesson from the academy of Sickville. If you're chronically sick, don't be too rough on yourself! You may have to do things differently but being normal is totally overrated anyways! Let's quit the habit of comparisons and start being proud of how hard we fight our battles. Every single day. The ones that are 24/7 and that we can never take a vacation from. Be proud friends, there is a lot of good in you, and I know you're doing better than you think! We are truly never alone in this battle. With love always, -Chelle