Monday, April 9, 2018

Life is Busy

Life is busy. Life is messy. Therefore I wear a messy bun like a crown upon my head....  I have so much going on my head spins. As I prepare for life, finish my finals (while ill), & prepare for two surgeries in two days next week. (GJ tube replacement Thursday & Endometriosis excision Friday.) I type tiny clicks of a keyboard.  All the while I list my long medication list, 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

To Date, 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.) 

I have clearly had a rough three months. Life has been crazy since my migraine cycle, Dysautonomia flare ups that started spiraling in November, and when I had to go back to J feeds in February. But last week I started a new Medication similar to Benedryl. (Hydroxyzine). Was I shocked when my nausea was in control, my migraines went away or muted, my full body pain highly lessened, I gained much more energy, & viola I started eating by mouth again!! I saw neurology yesterday. After long thought, it does seem due to Auntonomic Malfunction, my body is storing and not normalizing my body's Mast Cells. (The Body's allergy cells.) Mast cell issues are complex and hard to treat. But we are trailing new mast cell stabilizers in hopes we get the lid back on the POTS. I also am going back to physical therapy to get my wobbly, deconditioned body some strength back. We hope I quit toppling over with some strength. I love my neurologist. He always says "you're not crazy" and he assures me "we can always try things, we aren't out of options unless we quit. And we will keep trying." (If I fight, I know he will fight with me.)  I feel blessed to have a speciality neurologist who takes care of me in this complex form. Yesterday, I realized how much different knowledge he holds. He has to know all these systems and most doctors won't even try at that point. They would say it's out of their specialty. These cluster conditions are is in his specialty due to this being a common problem in POTS patients. But that's what's simply amazing about Dysautonomia specialists, they get the complexities. I won't lie, life has been challenging these past few months. But I look forwards with hope again. Something I realized, was I had quit praying for specifically "to feel good". I would pray for everything else, I'd ask for health. Finally, God made me realize, I hadn't been praying for what I needed, "to feel good again." Almost immediately from this prayer, I started a medicine similar to benedryl, and life improved a lot.  This also pointed to the possible culprit to my vicious three month flare up. I am not fine or in any form of remission.  I have a long ways to go. I can eat by mouth but not nearly enough. My stomach is not cured just because I can eat by mouth as well. It is still paralyzed. I know it seems confusing but GI paralyzation due to ANS Dysfunction, can change its courses drastically. This weekend I have IVIG. I am unsure if it is helping or not. (A discussion Neurology and I had yesterday.) It doesn't seem to be hurting me from what we can tell. These issues started before IVIG and are why I started it. I was slipping in August that's why IVIG was started. IVIG was an option to try. I wouldn't say this treatment is hurting me and we agreed we would keep going. Long term it could be super beneficial. I have noticed it has helped my Sjögren's Syndrome.                          It is Endometriosis awareness month. That being said 1in10 women have this condition. Killer cramps are not normal. If you do not know what this condition, Endometriosis is go look it up! Your knowledge may save someone suffering and misery. If you are a female with POTS we have a 40% chance or higher of developing Endometriosis. (New studies are showing. I'm sure Dysautonomia International's page has these studies.) Endometriosis is also now considered a cluster condition with POTS.  My body knows it's awareness month. (I joke.) I'm looking at another excision surgery as I ended up in the ER due to lack of pain control. It's been another condition that's been severe since November as well.        I will get my MicKey low profile tube next month and I am estatic! Hopefully I will get more nutrition in by mouth and can go back to a Gastric tube. This type of feeding tube doesn't require surgery every few months. God has put some amazing people in my life. Something He has shown me, is there is no better friend than a chronic friend. They don't care about what you have, your status, if your hair looks like crap, or your makeup is on. They only care about your heart and soul. I love the compassion and hearts sick people can hold for one another. The support is endless. I am SO very thankful for my fellow spoonies. I hope I'm as good to my fellow sickies as they are me. I wish the world could all see the values of true importances in life. Just the pure soul of a person, bodies don't matter, just hearts. These walls get removed when you get to a certain sick point. You can see more of what God sees in us all. Our hearts, not our scars, or earthy possessions. We all have potential and work to do here. Don't forget it. Spread the love-Chelle 

Tuesday, February 20, 2018

Prayer

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

Tubie Once More. And that's Okay

After 4 weeks of eating a diet consisting of; peanut butter, crackers, hummus, & little boxes of juicy juice.... I am ready for some real nutrients. My GI motility just keep declining. My Gastroparesis we thought flared. But I haven't been able to dig my way out. We have tried. So I have been starving and living on sugared IV fluids. That has been the hard part, the suffering from malnutrition. Getting the feeding tube put back in, isn't ideal, But it will get me the nutrition I need. It also makes my GI tract work, 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

Today.

Last week I tried IV therapy in hopes I could stay hydrated. But it didn't do the trick. My Gastroparesis worsened. 
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. 

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 

Monday, January 15, 2018

Water Victory

After over a week of eating very little food (or none some days) drinking 500ml in three days total (the past three days)... I just finished a WHOLE bottle of water!!! It may be a sleepless 2A.M. But I drank in a few hours time what I have been trying to drink for days! 🙏 Seriously, it is the little victories in life. I'm clearly not in the clear I need more fluid and I need food. I would have chosen to be admitted to the hospital days ago but I am SO afraid of hospital Flu germs right now. So I chose to be tough. (It's been hard to know what to do. You never know what the right decision is completely.) I know GI wanted to hopefully ease the flare and keep me safe nutritionally... But with the flu, it's a risk of so many factors for me. The flu with horrific nutrition? The thought of the flu with Dysautonomia alone is horrific enough! But the truth is you can only ride out a Gastroparesis flare. There are no real treatments, there are no cures, there is nutritional intervention but that's not actual treatment for Gastroparesis... It's just a life line to stay alive nutritionally. One I have been grateful for in my life. However I have been nervous wondering if a feeding tube is in my near future. Again. But Today I had no brain function it felt, I was limp and I got frightened. My body is malnourished. I feel it. I remember malnutrition. It is crazy what a week can do to a person. One day things are okay and the next you can't eat anything. That's my reality of Gastroparesis and Dysautonomia. Just feeling very blessed right now for my bottle of water. I will take any blessings and I will be grateful for them all. No matter how seemingly small it may be. I don't know what the next week will bring but I know whatever it brings the Lord will guide me through it. I will rest in him always. I am hopeful this is a sign of better gastric motility? I pray this ugly flare ends soon. So I can eat again and feel safe.Time will always tell all. -Chelle #starvingforacure 

Friday, January 12, 2018

Gastropresis Flare

From one day to the next... I was sick both days but Invisible illness is real. I look fine but I am not. One on the left, yesterday. The one on the right, today in an ER getting fluids with IV medications, praying I don't get the Flu. 

My Gastroparesis is flared. I haven't been able to eat anything of substance for 6 days now. Every time I sip Orgain, I get sick and hurt. Paralyzed tummies spasm so it's very sore as well. I am on liquids and a few crackers here and there. I lost 4lbs this week. I do not like the way this feels. GI told me we might have to do a three day admit to get control of symptoms and hopefully restart eating again.(which I have done those admits many times prior.)  I just got out of the ER. I needed a lactated ringer (IV) and some IV medication for nausea. If things don't get better, I will have a feeding tube again. What is hard are the memories that come back. Yet those same bad memories are surrounded with good ones full of pure Heavenly love  & Blessings. Which makes this rough patch more comforting.  One day at a time and lots of healing prayers -Chelle