Bruised not broken update

Snapchat filters really do help the recovery process. Hahaha! (I don't remember taking these but I looked like I was having fun right?) 

I may be bruised but I'm not broken.  

I thought I'd share embarrassing surgery stories/updates. 

  This picture below is hideous! But I have been SO sick. SO pale. (More then my redhead pale.) SO much pain. SO much weakness. This has been a tough recovery! I haven't even felt like posting until today. I've been in bed. If I can't even post, you know it's a toughie.  

I'm sorry I haven't been keeping up on my blog posts at all. Like I said last time... My life is crazy for Multipule reasons. Some which I can not share right now but one day. Then to get as dysfunctionally ill on top of it. It threw me off. Morphine normally helps these blogposts as you have all witnessed the two hour post surgery blogposts. (That's a joke but a true story. So ya know! I get on this lovely iPhone that I am so blessed to have after surgeries or in the hospital and, I dispurge every detail of my life that day. Then several days later I find these posts and I cringe a little... But then I laugh.) So two surgeries in two days. BAD idea! I in no way encourage this choice. I checked in for surgery #1 for replacement of feeding tube and endoscopy. (The little surgery.) I no joke... They gave my feeding tube to another patient that week. They went "oh that little redhead is coming in, let's give her tube to this other person... We will get her another one. She will never know." BUT they did not get it in time and they had to tell me the truth... You guys I waited many hours in pre op for them to get this feeding tube. Then they spilt my urine sample. Which I told them no use crying over spilt urine. There is always more. Right? (The down side was the lab took anothe hour to run the test before I could go to the OR.) I would like to say that's the end. But I woke up from recovery and no joke this elderly lady who volunteers was waiting outside the bathroom door with a wheelchair. (Disclaimer* I have nothing against the elderly. They are lovely people whom I am grateful for. They paved the path before us. We would be nothing without them.) I walked out of the bathroom and she snatched me! She grabbed my very sore side and almost pulled the feeding tube. I grabbed her hand and removed it and told her not to do that ever, and explained you don't grab patients... especially ones who just had surgery. (She looked at me like I assaulted her.) Then little did I know I was in the wheelchair ride of my life. Holy guacamole you guys! Then she told me to get out of the wheelchair sideways to get into the vehicle. I tried to explain to her my feet don't touch the ground if I attempted that and I would be diving off and fling myself off and probably fall on my face. She argued with me but I just did it the proper way. I protected myself. Luckily even with sedation on board I have safety.  I'm glad nothing happened because she couldn't help me at all. All I could think getting into the car was, "if I fall you're going down with me." Luckily no one was hurt and I made it to the hotel safely. But this is where the day changes... We get to the hotel. We pull up my mom drags this mess out of the vehicle walks me in and checks in. There where two younger men there at the desk they check us in. But they were polite. Isn't it amazing how simple common curtosey can be such a game changer!? The boy took notice of my beautiful hospital bands and they offered to help us to our rooms. We declined but it was just so refreshing to have some human kindness. (I always say be kind. Be brave enough to open a door, or give a compliment. In today's world it's hard. I don't know why but it's uncomfortable. But do it! You can change a person's day and it's contagious.) When got to the building and up to our room, we walked in, and it was dirty. Oddly dirty like someone came and showered then made a big mess with towels all over the room. Anyways, my frazzled Momma who as well had a rough long day. Looks at me and goes, "I have to walk back with all our luggage to the desk?" I thought she was going to cry maybe... So I luckily had a good idea! And I said, "Mom grab the phone and call the front desk from the room." So she calls. The manager came to us and, looked in the room. (Like we did... It was an interesting mess.) He apologized and helped us to the other floor, to our new room. We weren't mad at all. Things happen. But this guy was so kind he said, "I'm waiving your room for tonight." And we told him, "no he didn't need to do that." but he said, "I can see you've had a long day and this is not exceptable here and I insist." I can't explain how much that act of kindness meant to two worn out ladies. He told us he noticed the hospital bands and said well you're out of there so that's a good thing. We giggled and explained we were there because I had to be at the hospital at 5am the next morning for another surgery. (I am impressive folks.)  We thanked him and got settled in. My mom was SO tired and hadn't eaten all day. She was going to have to walk through several buildings and a block away to the vehicle to get food... But because they waived our night I told her she could afford to do room service... That way she could rest. She did and it was a blessing she could rest and eat dinner, (her only meal that whole day.) especially with a full surgery day ahead of us the next morning. I know the hotel could have just changed rooms for us. They didn't have to be kind and they definetly didn't have to waive the night's fee. But it was a tender mercy on this particular day and we are both grateful! Friday morning I checked in and had my surgery. I was pretty pale that morning and my surgeon said after the fact that she wouldn't have done surgery again if she could go back. Surgery itself went great. Micro Endo and an ovarian cyst removed. Lots of physical therapy ahead. (That stinks major!) but they cleaned things up and she said I don't need to go under for a long time. All wonderful things to hear. The post op nurse wouldn't listen to me. I told her that I was staying overnight and she was not following my surgical plan at all. Nothing she said made sense. I kept telling her this. But she told me my surgery wasn't that bad so I was going home and that I didn't have Endo just a cyst. (I have diagnosed Endo and Adenomyosis. This was surgery#4. It's bad now.) She took my cath out as well. I told her not to. I asked her to check first because none of this made sense to my surgical plan. She didn't. She took my cath out. I couldn't pee for hours. I was miserable for hours. She finally put it back in and guess what they were keeping me. With Dysautonomia the body takes longer to wake up from anesthesia. Your organs go to sleep as well in surgery and they wake up too, but in Dysautonomia we get urine retention a lot from the drugs. We need a day or so for our organs to wake up again. So they cath me for 24hrs. Which I prefer then the alternative... But she just wouldn't listen. Then I got to my room and all was well as could be. Next morning at 4am they took my cath out. I questioned it because it hadn't been a full 24hr period. I spent the day not fully voiding my bladder which is bad for your kidneys they get backed up. So that night they decided to re cath. The nurses couldn't get in due to too much cathing causing inflammation. So they tried putting two in at a time?. (If I would have known. No way. No how... But I didn't. It didn't even make sense.) A long time later they failed and called the doc in. She was mad at those nurses. (No one knows what they both were trying to accomplish. All they did was injure me.) we waited hours due to the cuts and inflamation the nurses caused. Later the doc came and put one in. They left it in for a few days. The doctor said I would have been able to urinate fully on my own but all the putting in and taking out of all the caths unnecessarily caused inflamation to where I couldn't pee.) So, I went home because we then had to wait for the injury they created to heal! well to family's house closer to the area and days later came back to get it out. All is well again.(I am aware of this embarassing story but hey it happens a lot apparently to people.)  My surgeon is not okay with the treatment I received and they did hurt me by being wreckless. Recovery has been tough and I'm still struggling. I'm still in bed. I wish I could just have 1 normal hospital stay for once. Being sick has built up lately. I had a horrific migraine cycle in November that they thought was a stroke or spinal fluid leak! Such a scare. Then my Gastroparesis became severe and I starved all January, resulting in getting my feeding tube back. Then I spiraled severely with Endometrisos to the point I was in massive pain and they booked me for surgery ASAP. I pray now I can get back onto my feet and regain strength. It's going to take time if things go right. I am fully deconditioned. Since surgery when I stand my heart burns because I have POTS and I'm that severely weak. I am proud despite all of these things, I did not quit my class. I had an A up until the last two days... I got a C all due to the surgery. My teacher was supposed to waive a few things and she didn't so I am praying it gets fixed and I get at least a B. It was discouraging to work so hard and loose that A over my body not working right. When I was 19, I took English (same class) and I had to drop out that semester to have this same surgery. So that's been my big fear is to fail out of school. It's just one class but for me that's a lot. I'm not normal. I don't function normal and that makes me so mad. But there is a reason and my advice to you sickies out there who are struggling... Let yourself hurt. It's okay to break sometimes. We all do, and if a disabled person tells you differently, they are lying. Being chronically sick to where you can't function is hard mentally. Just remember you are not failing at anything if you do the best you can (even if that's taking a shower for the day.) you have not failed. And even if I fail out of school, I would like to share a lesson I did learn in life. I think we all need to hear this lesson! When I started my school I was SO afraid I kinda locked up. I almost convinced myself not to do it. But a wise person asked me something. "Would you rather fail because you never tried and wonder your whole life what if, or would you rather fail out of class knowing that you tried despite everything." Take the chance! Don't let yourself wonder for the rest of your life "what if". You can not fail as long as you try your best! Life just redirects is and sometimes things don't work out for unknown reasons. But God has a plan for you. Trust in that. Believe me I wonder why I'm here a lot of these days when all I do is lay in my bed. But I assure you we all have something to do here... Otherwise we wouldn't be here now would we? Trust in God and keep trying. He never said it would be easy he only said it would be worth it! Let yourself hurt, get mad, but don't give up on yourself. Love always -Chelle 

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 

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 

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 

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 

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 

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