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. -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 

Monday, January 8, 2018

I Don't Know.

I hope everyone was able to enjoy their holidays! Now that the Holiday season is over I thought I'd update again.
My Blood Pressure was stable for weeks. But my health never bounced back really. I think I had 2 good days in two months time. Last Sunday it decided to go back up to the stroke zone again. I found out due to the massive migraine that accompanied it. (It made me check my Blood pressure) This round the blood pressure seems to be triggering the migraines. Since I had restarted the Fludrocortizone again with doctors okay... I automatically stopped it. Since then my blood volume is non existent (if you ask me) I'm pre syncope basically all the time. I walk like I'm drunk. So if you see me wobbling around, don't worry 😉 I just have no blood in my brain. It's actually totally safe as long as O don't hit my head passing out! Another reason my Neurologist is thinking it is not the Fludrocortizone. I'm not retaining fluid. So we will stop it for now anyways to be safe. It #FunFact Another option is, it could be from Estrogen treatments being stopped for treating my Endometrosis. But again that's not a concrete possibility... That's just me and neurology guessing (because that's the only thing that has changed in treatment.) I am back on medication to lower the blood pressure. But it is giving me such severe side effects we will now be switching to a different blood pressure/beta blocker. Because I have a high heart rate right now. (Heart rate has been in control for years with my current beta blocker, propanolol. Prior to that my bpm was an astounding 250. Going off a beta blocker is not really an option.) with Beta blocker to lower heart rate, it's still very elevated right now. I have now been sent to cardiology for further evaluation. We all know it likely will not be a picknic and we likely won't come up with answers. But we have to start looking for what is wrong now or if I am having a issue or another cause outside of POTS. I do have a history of the lining of my heart being inflamed. This was temporary and resolved itself a few years back. Typically lupus patients have this happen. It could be related to the Sjögren's syndrome I have. Last week I refused to call doctors because, I was sure it was medicational. I wanted to just wanted give my body time to get off the Fludrocortizone and readjust. It did not readjust. Neurologists told me at 8 days I am rid of the medication and prior I was off of the Fludrocortizone for like a month and back then the blood pressure remained elevated. The old blood pressure medication made me depressed as a side effect. Not a very fun side effect. I think when it's the holiday season anyways and you're sick naturally you get down. So even though it wasn't the best idea, we went for a walk to the lake and got some fresh air and sunshine.
Because sometimes you just need to do what's good for your soul. And it was good for my soul for sure.  Life will be tough. Times will come when we do not want to do what we have to do. We will wonder "why me". We will inevitably miss our pre sick lifestyles. But take my advice and don't unpack and live there! We don't always know what's ahead. Trust in the Lord, he will always lead you home- Chelle                                                 P.S. If you could keep my very sweet friend's family in your prayers it would be greatly appreciated! Three of their 6 immediate family members have cancer (two children) and they need our prayers at this time! We know the power of prayers! Thx!  

Saturday, December 23, 2017

12:30am Chronic101-Holidays-Faith

It's currently 12:30am and I can not sleep. I have painsomnia that nothing is touching. Side effects of the Decaron I think and to top it off Endometriosis Chaos no one ever needs. My pain levels are through the chart essentially. Go me! I finished up my monthly IVIG infusion they switched me from gamaplex to Gammaked, which they say is suppose to be very close. This was due to a national shortage of Gamaplex. So everyone had to make the switch. (Literally the second my body adapted to the gamaplex they had to switch me up.) But let me tell you there was a difference to my body between the two and it made me sick. I am doing better tonight luckily with those IVIG side effects. My health is a definite struggle all around right now. It's like playing Wack-a-mole and I'm totally loosing. Badly. I can't keep up with myself. Some days are better than others but things simply are not lining back out or other new things pop up. It's funny how a person can deal with so much crazy health issues before they start to become defeating. I am always pretty positive and handle these things well, but sometimes (like all the chronically ill)... It builds up and wears a person down naturally. So we have to deal with the stress living with chronic hardships bring.  The Holidays never help a flare up as well. I simply don't have the energy or feel well enough to do what I want to do every year. I'm sure the other's can fully relate. I have basically spent the week in bed. So when my mind is buzzing all night, my brain is full of worry, and my heart is a bit defeated, I grab my scriptures. And I happened to open to a highlighted 'sticky note' -D&C 6:19 "Be patient; be sober; be temperate; have patience, faith, hope, and charity." The second highlighted section D&C 6:34 "Therefor, fear not, little flock; do good; let earth and hell combine against you, for if ye are built upon my rock, they cannot prevail." When life and worry consumes you lean to the Savior and God will be there to catch you when you fall. He will ease your heavy burdens if you act upon him in faith. Let him help you through the hardships of life, when life gets too heavy for you to hold up. He will help carry you. Hang tough lovies! We will all survive the Holidays Chronically fabulously! Just do the best you can and try to relax and enjoy it. Definetly do not compare yourself to anyone else. I mean did the person you may be wanting to compare yourself with this week sit on the phone for hours fixing medical errors? Did they have infusions for days? Did they have the countless "medical chores" you have? Did they set up a mini house hospital? Did they suffer from insomnia every single night this month? Did their symptoms worsen for no apparent reason? (Insert your medical caregiving struggle/work/energy-consumer here.) Doubtley so. We may be busy in other ways but we are still busy trying to keep these bodies going. And those ways are typically invisible to others and they are different lifestyles. That's okay. Embrace your weird A.K.A differences. Put your body first,  keep pushing forwards, Love yourself & have a Merry Christmas ❤️ love -Chelle