Thursday, July 12, 2018
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
Sunday, July 8, 2018
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
Tuesday, July 3, 2018
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
Saturday, June 30, 2018
She was surprised to see all of us girls and her (as he was telling her repeatedly throughout the visit (playfully) "awesome" grandson.) I know for a fact she didn't expect to see me. I had not been to Utah in eleven years! (Insert photo pink dance sweater at grandmas fresh yr.) My chronically sick body as you know does not travel well. It just wasn't in the cards, but this time it was. I prayed on it and rapidly had the feeling I would be okay, and I was. I needed to say my goodbyes to my Grandma and I will never regret it. She was excited and greeted me with the compliment that "her Dolly was beautiful" And at the time what she definetly didn't know, is I was struggling with many personal confidence issues. Issues that stem from being disabled and a reversed year in my ongoing fight. (I've had a bad year of health.) And other people have told me this but for some reason this was special, and felt different. This time I actually believed it. My heart was full to see my Grandma and I was happy to she she perked up, despite what the hospice nurse was telling us. I LOVED this trip. It will always hold such a special place in my heart. Many tender mercies, blessings, and pure love of the heavenly spirit happened throughout our trip. I will share a few....
Her retirement-home holds sacrament (Church meetings). While waiting to say my goodbyes, I was sad and nervous. I walked down the hall to get some clarity, and take a deep breath. Then the piano started playing beautifully the hymnal, "sweet hour of prayer". I felt the Lord's grace and comfort for me. I said a prayer and returned to the room. She hugged me and, we had a small chat about Heavenly Father and his angels. She told me "don't worry" paused, "I'll meet you at your wedding." And looked me straight in the eye. I knew that she knew, I knew, what she meant... It was a sweet moment. I will always hold this near to my heart. I was not worried about her not making my wedding, as I didn't think with her medical situation she would be attending from out of state. (Though of course I wanted her there.) I later realized the message was to "not worry" because I worry too much... And the wedding part was its own seperate message... And I as told her, "I will be waiting at my wedding." We hugged again and left knowing in my heart I would see her again one sweet day and knowing in spirit she would attend my wedding day. 💕 We said a family prayer and returned home. About a week or so prior she had my Mom put me on the phone. She was excited about my recent marriage engagement and asked me simply, "do you love him?" And I chuckled and said "well of course I love him. I'm marrying him Grandma!" She said "Oh good! Well, don't care what anyone has to say, don't listen to anyone, none of your friends or any of that or things. All that matters is that you love him and he loves you. The rest will all work out and other opinions don't matter. Just do what's in your heart and do what's right and things will always be fine." Grandma ALWAYS had advice for anyone in any situation. And it was always good advice. She was in hospice for one week solid. Then she passed and was reunited with her Husband and Our Heavenly Father, and had a reunion of loved ones to reunite with in Heaven as well. Many more blessings occurred for our family these past few weeks. Our family is special and though we miss her dearly, we find happiness, and peace through the atonement and the resurrection of Jesus Christ. We have no reason to fear death for we all have eternal plans. We are each on our divine eternal destinies, one day at a time, in the role we were meant to play, learning, and growing along the way. Knowing we can make it back through Heaven's gate again one day. The place where we will be whole again and glorified. A beautiful blessing for all that will be. Heav'nly Father's plan. I always want to be with my own family, and the Lord has shown me how I can, the lord has shown me how I can." 💕
Wednesday, May 30, 2018
I don't blog as much anymore, though I always intend to. My days are now filled with studying and learning.
Monday, May 21, 2018
After a loonnnngggg weekend wait and a day, Neuro called. It didn't go that well but none the less. No seizure but* my body is reacting and doing the exact same thing as a seizure. But no clue why. I think they will be going back to the drawing board again. However last night when my migraine hit me like a ton of bricks. I had a lot of fluid go down my throat and out my nose. Over three Kleenexs of salt water. After I let that stuff, whatever it is drain out. I felt so much better the pressure went away and I could feel it coming off my brain with letting it drain out my nose. No, it's not allergies or typical "drainage", I know what that is. (This occurs after I'm very symptomatic. It occurred after my last "involuntary muscle" issue. So long story short. I may indeed have a nasal spinal fluid leak. So we will be testing for that issue. If that is the case it will need repaired. But there are so many serious symptoms not answered currently.) The spinal fluid leak even if it is occurring doesn't answer them as well.) I am not very happy right now about this. Fevers, and scary symptoms are not my cup of tea. I know something is very wrong and I will get it figured out this time. They told me not to loose my spunk. Well this is me not loosing my spunk and fighting. It gets me far. The doctors have admitted it many times when I was well. Well not I am sick again and they aren't so happy about it anymore. What makes me well? Fighting. Never quit your fight and NEVER ignore your gut instinct! I promise it will always lead you where you need to be. God has been talking me through this fight. I don't have the answers but I'll get them, and I know it will be alright as much as it seems like it won't right now, it's all good. This is just one of the many many blessed tender mercies this weekend. Coincidence? I think not!