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!