Monday, April 9, 2018
allergies, medical equipment, and medical conditions. (I best get some brownie points for these well organized and detailed lists.) I counted today that I have 15 medical conditions!!! FIFTEEN! The next time a doctor pills shames me, that's going to be the new response, "FIGHTING FIFTEEN." If you ever get pill shamed by a medical professional who doesn't know your case or anything about you or your conditions... Stand up for yourself. You are your best advocate, and a lot of times Hospitalists just don't have the knowledge. So, speak up because you may teach them a few things, for the next patient. I always make them go over my medication list with me. Then as we go over it I ask what that professional would remove. (They always end up to their own suprise stumped and have nothing to remove.). That's when I get to educate. Pill shaming does no good for any person who is chronically ill. I take as little as possible and I'm on too much I agree! But I don't have a magical cure and life gives us trials. Sometimes when cures don't exist you have to do what you have to do in life. Like it or not. I mean do they think I enjoy keeping track of all of these things! Answer: "Nope!" . I have 15 medical conditions! Now that is CRAZY!!! Harsh realities but comfort knowing God always gives us what we can handle. -Chelle
Saturday, March 17, 2018
I thought I would do an update. Since some days you have to sit with your feet on the dash outside of your Neurologist's office and ponder your blessings. (While you recharge your energy.)
Tuesday, February 20, 2018
Tonight I found myself in a horrible POTS flare. Complete with; severe migraine, nausea, chills, maxofacial pain, chest pain, heart palpitations, tremors, and honestly probably 900 other things. My body literally was stuck in fight or flight mode for hours. That's due to ANS dysfunction. (It's SO much fun when your body panics like you're in danger, for hours, when nothing is wrong.) In these cases I use my treatments, and I use my distraction tools. At the end of the day if I can't fix it, it's best for me, to try not to think about it constantly. Which is one of the best things I have found helps me through flares. But when my distraction techniques are not one ounce effective, that's when I know I am in trouble. So after so long I said another prayer. Ironically I immediately panicked over the severe migraine. The nausea so severe, I had already stopped all tube feedings. I was at my absolute worst on the sick scale. But literally the second I started to cry in panick, the sign on my wall jumped out to me. It says, "What if I fall? Oh but darling, what if you fly?" I see this on my wall so often, I never read it anymore. But for whatever reason tonight I did. In that moment it calmed me. I knew it was Heavenly Father telling me, "it's okay. I don't have to always go to my worst points of Heath. I was physically at my worst in the moment, but the fear was if it didn't improve. I started panicking of hospital stays and well no relief. That has been the pattern lately, but that did not have to be the case for now." And I knew in an instant I was going to be okay. Then the symptoms that where spiraling out of control by the second, became more controlled. Now I am just slightly miserable which is a drastic improvement. I am a blessed person. Prayer works but we have to have faith. But we also have to listen or in this case read the signs. He is always there -Chelle
Wednesday, February 7, 2018
to keep it all moving. (If you don't use it you loose it.) Plus, I can start to push this belly once it heals. We will keep trying, pushing, & fighting. But hey a feeding tube gives life! I spent the past month confined to my bed. I am deconditioned again. My whole body has paid a price of weakness from poor nutrition intake. My heart hurts a little when I think of how much hard work I put into this. But then my heart reminds me, I am still me. I am still here. I have a life to live, love & embrace. I'm picking myself up, brushing myself off. I will keep going forwards,because I am still me. But I know I can and will get back to that. I am strong! Heavenly Father has a plan for me. He told me "I wouldn't be cured, but I would live again." Now it's time to build up nutrition and live some more.
Embracing my tube because it isn't a negative thing. Some people are working hard to show that it's just a way to get nutrition. It's not all bad. People think it's deathly but what they do is create healthier patients. And that's what I am doing, I am getting the nutritional help I need to sustain life. I also will be able to workout again soon. I'm excited, living & thriving, not just surviving. "You have to roll with it. If you don't roll with it, it will just run over you, do you wanna get all flat". (Off Miracles from Heaven.) I know God's plan for me, I keep walking forwards one day at a time. We can all do it! We can do anything we put our minds too. Never give up hope. It's much to precious of a gift -Chelle
Saturday, January 27, 2018
Last week I tried IV therapy in hopes I could stay hydrated. But it didn't do the trick. My Gastroparesis worsened.Today is hard. I have not improved since leaving the hospital last week. I have declined. I am starving again. My blood sugars are dipping and it is all I can do to keep them up. If I try any sort of nutritional supplement drinks, I get sick. I am scraping by on peanut butter and Grahm crackers, and juice. I am fighting hard. Gastroparesis has consumed my life. I just finished IVIG. I was hopeful it would flip me back to eating well. My HomeHealth nurse just let me know I have a fever all day today. (So we will be monitoring that.) I am weakened. Everything is heavy and hurts. It's all I can do to keep my eyes open yet I can't sleep. I am running IV fluids and for now I feel it is best to contact GI Monday morning. I think I need a feeding tube put back in. That was spoken of in the hospital but I faught so hard even my GI is struggling. We were trying to jump start this paralyzed stomach. Treating it as a flare. But how long do you wait? I don't look at this as the end of the world. I don't look at this as permanent. I simply know my body needs fuel to function and fight. If it takes tube feeds to do this, I will go back and start again. I still need to talk with GI but from today's point of view three going on 4 weeks of bites, is not okay. It is affecting all my health issues, as I get weaker. I don't know what the future holds. But I do know God keeps his promises. He never said I would be cured. He told me I would function again. And that's where I will rest, in Heavenly Father's promises. High times come, hard times come, but they all come for a reason. -Chelle
GI sent me to the hospital where I stayed for a few days. I then opted to come home due to hospitalists overriding my GI's orders. These doctors did not believe I was in fact sick. Leading to poor treatment on my end. GI felt it was a flare up and we hoped to just bounce back. We came home with GI blessing. I did not receive proper care during this time due to poor judgement calls. We bumped me up to liquids. GI was not happy the hospital doctors treated me so poorly and blocked his orders.