Saturday, April 29, 2017
No help. A lot of judgement because though I was clearly sick and I had a fever as well, that would not break... But all the tests were fine. I was sick and I was afraid. The healthcare system definelty failed me Multiple times at this point! This picture I hate looking at because I remember it! And I just don't look well... one Year Later...YESTERDAY my GI was on cloud 9 and He is very amazed with my improvements over the past 6 months. It's truly miraculous and I do look so much better! The whole office buzzed lol (I've never been seen with makeup nor hair there. Just emergencies/hospitalizations and surgeries) I am keeping the CURRENT tube I have in. (GJ) due to wisdom teeth issues. Oh yes they have attacked me and I'm getting them out ASAP but of course I have to do it in hospital and it's complicated to get set up! And my Endometrosis needs more weeks to attempt to improve with treatments. Surgery can't fix it all anymore it's now complex & I get to fight it again with treatments. So in the event that the current tube comes out because it's way past its life expectancy and can fall apart (like last year remember that?) in that case he has given me 2 Mic Key Gastric tubes that I will replace at home on my own and I will go to a G tube. Then we will see what time brings and he thinks I will be tubeless in time but also thinks we don't want ANY set backs like moving too fast and agreed as much as he said he wanted to just yank the current tube, I (pit of excitement) I did need a tube to bumper my nutrition still. So to sum this up I will be going to A straight Gastric tube AKA stomach tube. So we are loosing the small intestine tube that bypassed the stomach completely. Truly major blessing here. I am SO grateful and blessed! IT ALSO MEANS NO MORE RISKY SURGERY FOR ME every few months 😊 (J tubes have to be done under surgery because they have to be guided into the small intestine.) so no tube surgery, which will only allow my body to become stronger and it will be less risks for my Dysautonomia to flare severely. (Andy type of surgery, sickness, pain will cause a flare that could be permanent and put me back in bed daily like I have been for the past years. But I have a strong faith though I won't be cured, I will be so much better and functional. That's what God told me that's what I will remember. I know that doesn't mean I will be perfectly fine. I just had a little flare up last night but I'm feeling better today. I also know better and my specialist how my body works in my case and how to help it win. Faith not Fears)
Friday, April 21, 2017
I've had a long day of appointments... (It's that time again ten hundred specialists to see) But I still got to laugh at this sign! "Healing is in the air." I stood there for a minute just to make sure! Lol Only at a Hospital will You find such a sign! P.S don't smoke! It's bad for You! No no!
Monday, April 17, 2017
Wednesday, April 12, 2017
What,You can not do tricks while typing?
Thursday, March 30, 2017
Today was rough around the edges but by looking at me you would never have known. I had painsomnia last night and probably fell asleep finally around 2 am. I woke up as late as possible this morning knowing I had a full afternoon. My Endometrosis/Adenomyosis pain level is high. Too high. (I hate those pain charts. In a scale of one to ten they ask... My responses to these questions are normally 50 or 100) but I wanted to get dressed and do my hair and feel semi human despite the pain. So I did it. I was going to hurt no matter what I did today. I also could not take any pain meds because I had to drive and obviously you can't do both... So I trudged through! I went and had my labs drawn out of my port.
We smile and give thumbs up when we get needles in our chest 👍 Gotta check those electrolyte levels with these POTSie kidneys I own... I then trudged forward to Walmart (cover my eyes) I hate going to Walmart. It's always busy... I park Handicapped and there is always someone who has something to say about it! (I can hear you talking ever so purposefully loud two steps behind me. No, I am not lazy, nor am I borrowing someone else's handicap sticker) Or they just glare at me... I get that I don't look sick... I truly do but in all honesty We hate being the center of a judge mental skeptical! Younge people get sick too. Most disabitlies are considered to be invisible disabilities which means, You can not tell by looking at the person. That person looks fine on the outside. But I had to get Orgain! And it's the only place I can find it... And I basically live off it. So to Walmart in between appointments I went.
Thursday, March 23, 2017
Though its snowy and rainy today the past few weeks have been gorgeous! And this girl has been tolerating the heat! )you guys I couldn't even walk from the car into a building without getting heatstroke the past two years due to Dysautonomia! (Praying it lasts and I can enjoy the sunshine again like I used to) here are some of my good days away week 💕 I am so appreciative MY good days! The days I never thought I'd see again in this lifetime!! I am so blessed beyond measure...
Thursday, March 16, 2017
Monday, March 13, 2017
The other day sitting in sacrament meeting a new anology hit. (As I stared at the glitter felk upon my desk. Wait why was that there? I was having a good day? Oh my angel knew ahead of time I'd be feeling sickly soon enough. I quickly understood the need for glitter as my body took over the rest of my time there. But I got an answer I needed to know in my heart. Before havoc reached me... "Scuffed boots" it was a clear answer to my prayers. Sometimes when you are chronically ill or disabled, your instinct reaction is to cover it up. No matter what, where, or how I am doing there has always been a part of me inside that wants to erase it. I just want life to be "normal" again. I too want to be like everyone else. I don't think it's abnormal to not want to be ill. I think every sick person wants to be healthy fully. That's the goal. But sometimes it simply isn't attainable for all. Some of us come a little different or complicated. You may need a medical degree to know us. And that's okay. You know why that's okay? Scoffed boots.... I have a pair of cute black boots. I got them for Christmas. I loved these boots... I picked them out. And the very first time I wore these boots... I don't know how but they easily were scuffed. I was so mad! My new boots were permanently scuffed up after a few hours of use. Are you kidding me?! But then I laughed because those boots are just boots. I remembered how much I loved those boots and then I decided to wear those boots proudly. That scuff added character. I embraced the flaw, laughed a little & walked on proudly. Every single time I put My boots on I giggle when I think of the character I wear upon my feet... Those boots are more then boots they are a memory that brings me happiness. Happiness in simplicity. They are a reminder of how a little character is life changing. Those pieces that are hard to understand of me, My medical complexity just adds character. It's not all of me but it's a part of me. Sometimes we just have to except that chronic is a part of who we are. Yes, chronic comes with some baggage of some sort or another. There's a lot to construe. I have a lot of juggling in My everyday routine that takes up time and energy. Those are my attempts to fix the chronic as much as possible. To hide it away is my instinct but Heavenly Father doesn't want me to hide it away. What good would that do? What would I learn from My battles in life if I embrace them fully? If I didn't walk around with an arsenal of medical equipment in my purse... To combat my symptoms that are constantly changing from minute to minute. If I didn't have to think or plan every little thing ahead of time to my body's possible needs. Well I would be "Normal" I would be a lot more predictable! but those things are a part of me. The quirks make me a whole me. They keep me humbled among many things. But being different, has been a gift. Heavenly Father let these struggles in not just to build me. Nope, he knew I wouldn't be satisfied with just existing. He knew me. He knew My need to not just fight my own battles but the will in my heart to help others in the midst of it all. If I didn't have battles of health I would know very little about life. Oh no He knew I would find others. I wouldn't be able to take this knowledge and try to lend a helping hand without my character. Whatever that means. He knew I couldn't sit on the sidelines of anyone in the midst of a struggle earthly. That I would have to get up and try to help. And I'm glad I have character. Just like those "scuffed boots" a little character never hurt anything. So embrace your character no matter what it is in your life. When you kinda want to have new shiny boots but life gave you scuffed ones... Wear those scuffed boots with joy in your heart. Smile when you look at them. Don't kick them to to curb or wear the other pair. Wear them with dignity. Walk with your chin up confidently in those scuffed boots that Heavenly Father gifted You to let life change you for the better -Chelle
Thursday, March 2, 2017
Today I had an unexpected event. I went to get my labs drawn via my port. My usually peeps were not there. I used to do my own port care as you all know... But my doctor as of now doesn't want to get me supplies through home health pharmacy for just a lab every other week. (You see, I can not do my own labs at home... I have to go get them done.) I can access my own port a cath. But it's been pointless since off daily Infusions. (Until today) So I go and I put my trust in others. But today really caught me off guard. My new nurse
Put a dirty germy file on my "sterile field". I should have spoken up then. But I am tired of being the patient who is always speaking up. (You know the pain in the butt one) I knew that was not good nor safe. But I let it slide. Then my nurse brought all of my port supplies and opened them & sat them right on my now dirty field. (From where my dirty file was sat, opened, and roamed through.) She then proceeded to grab my sterile port needle with her bare dirty hands. She touched the needle itself with germy bare hands. Those needles are to be sterile for a reason. I asked her to put gloves on that very second... In hopes she would realize she was contaminating all of my supplies. She assured me she would. But first opened all supplies that are sterile with dirty bare hands. She touched everything. Then put gloves on? I should have refused. I should have left. But I did not. I did not because I am so tired of fighting with Heath care professionals to do their jobs right. They way to not endanger (Me)) the patient. It sounds simple. Just don't let them harm you. But it's not always that simple as the patient. Sometimes they let you second guess yourself. (I had spoken up a few weeks prior & it seemed pointless) Sometimes we don't want to be the bad guys for once. So I had a dirty needle stuck into my heart. Right into my bloodstream. (Dumb) I could go septic over this. It could kill me literally. But hospitals do not have to do these things fully sterile anymore. For reasons beyond me. Because it's dangerous. But the actions by my nurse today were completely inexcusable! That was not partially sterile at all! That was fully germ infested! Pure danger. So I second guessed myself into thinking it would be okay. I was overreacting...But the truth of it is... It is so NOT okay! The nurse just put me at a huge risk. And if she did it to me... How many others are getting the same treatments? Not all patients know central line care protocols. They just trust those very same nurses to care for them safely. But they are not doing it safely at all. Not there. I can now become very ill. I pray I will not. I'm still mad at myself... So now I will report it so they can hopefully get the training needed to not kill future patients. I will also be more bold in the future & stand my ground. I won't care about the nurses feelings. I will argue my case. I will get eyes rolled at me. I will be scoffed at some more. However, I will be safe and not sitting here worrying I'm going to go spetic. I know what I know. What's the medical world coming to when you constantly have to force nurses to do what they should already be doing in a serious nature? This is my bloodstream... I always wonder in these situations, if that was your family member would you have just done that so carelessly? It's truly frightening. Don't let any medical professional harm you. Take a lesson from my mistake today. Speak up. -Chelle
Wednesday, March 1, 2017
It's Endometriosis Awarness Month.http://www.endochallenge.com/2017 -Chelle
Tuesday, February 28, 2017
I woke up to snow falling. Big beautiful feathery flakes! Me and snow, we have a thing. I literally opened the blinds and it was as if the snow had just started falling for me. The snow felt like a sign from Heaven to keep trying. (It was like a fleck glitter. I needed it.) Things do not happen on our time lines. But that doesn't mean what's meant to be won't happen for us in due time. Somedays, I truly wonder why I blog. Why I ever started this thing! Somedays I think, "I've officially lost my mind." And here I am doing it again! But it's always followed with a spirtuial confirmation that I am doing the right thing. So I continue to post about some times seemingly boring thing. Others I wish those days were seemingly boring for they were rough. My life has changed over the past few months. I've witnessed miracles really. I've come a million miles. I won't give up now. Things are really just starting. So what I had a bad week. Am I going to let a bad week defeat Me? No. I want my goals to be reached today. No, that's not true I wanted them to be reached yesterday! I get frustrated. I know these things about myself. I like to think that everything must happen on a perfect little timeline. Which is funny the past 5 years of my life have definitely not been put on a timeline of "life plans". The past 5 plus years were not in my plans. Are you kidding? I begged. I pleaded. I drug my feet. No! But it was a part of my plan to grow and strengthen me. And when I realized that... I decided to embrace My life. Heavenly Father does in fact give us more then we can handle. Yes. Because if we could handle it... We wouldn't know how to problem solve. We would not know how to make lemonade out of lemons. I doubt we would know true compassion for others. How lending a helping hand to another in life is life changing. How could we feel if we have not felt hardships? How would we know the good was so good? We would all be comfortable in our little comfort zones. And that my friends, that won't get us anywhere. So I'm going to keep moving out of my comfort zone. Because I have So much more to do, see, & experience. Life will constantly and consistently throw you curve balls. I prefer to dodge them. I don't like things thrown at me. Literally. My hand eye coordination is hilarious. I'm the same way with the metaphor. Satan wants us to doubt ourselves. He wants us to feel like we have failed. He wants to interrupt our Eternal plans. That's how he drives a wedge inbetween our paths to Heavenly Father... In hopes he will win and we will quit having faith in the goodness of life. If He can get us to quit and give up on our plan eternal he has been victorious. We will quit turning to our Father in Heaven, piece by piece. He is a sneaky little devil! But sometimes you just have to be brave and keep trying, moving forwards. I know Somedays my head just spins but those are the moments we have to be the strongest. We have to put our feelings of doubt aside and just rely on plain old faith. We don't know what's ahead but let's go forward in faith in Heavenly Father's plans for us, thinking it is a wonderful life. Because it is... Put your umbrella down and dance in the rain. Let's not block the blessings from falling upon us. Especially over worries that someone else might not think we are "good enough" or any thing else. We are! https://www.mormonchannel.org/watch/series/mormon-messages/shower-of-heavenly-blessings
"Now it's time to finally spread your wings and soar to higher things you know the limit is the sky As you go if you sometimes fail when your spirit's frail remember you were meant to fly"
"Now it's time to finally spread your wings and soar to higher things you know the limit is the sky As you go if you sometimes fail when your spirit's frail remember you were meant to fly"
Chins up Dears-Chelle
Sunday, February 26, 2017
to put it lightly. It hurt severely in ways you couldn't understand unless you have been there too! And a lot of my Gastroparesis friends can look anorexic at times. What people don't see is under the clothes lays a feeding tube and/or an central IV line. But most importantly a very wonderful person who is struggling to not starve to death. And sometimes they do starve to death.... Many diseases cause weight loss and malnutrition. Anorexia and bulimia do too. They can result in death. So You think that young girl clearly struggling with body image is going to take this viral attack at her body well? (Assuming that's what's even wrong) Dont poke fun at illness in any form. Our laughter should not come from dragging another human being through the mud. We should not tear down to build ourselves up. That's bullying. Love one another. You don't know what you can't see on the outside. You don't know what battles people are fighting on the inside.. What if that was your Social Media post? Or your family members? Would it still be funny or hurtful? Let's just be kind to one another. I am going to work on this too. Kindness is contagious. I also believe being mean is contagious as well. Even unintentionally. Satan wants us to sin. So it's easy to laugh. But be the light of this earth and the example to treat all with respect, love, and kindness. Online as well. It's easy to hide behind computers... If You saw this girl in real life would you go up to her and tell her she was stupid? Probably not... Treat people the same online as you would in person. I know if we all do these things our hearts will soon be filled with happiness and love. Thanks! Your Friend-Chelle
Saturday, February 25, 2017
I've slept for the first time in a few days! 🙌 I really needed that nap. Dysautonomia is no joke! I do not like it when I quit sleeping. It's torture. Literally they used to make war prison camp victims stand and not sleep for torture. (Yeah, a little fact I picked up from being sick from a doctor 😂) I learn all kinds of things just being Michelle! Because my messages were not relayed to my doctor properly. But I was told My Doctor had taken care of everything. So therefore there was nothing I could do... Luckily my doc will be contacting me again it sounds like and we can straighten it all out. I am getting tired of phone sagas. If you live chronic don't give up. Because sadly this happens often and the doctors are not even involved but you think they are because that's what you are told in the phone.... So don't give up call them until they get so annoyed they put you through (if you have to) don't be afraid to stand up for yourself! On a different note, I am slowly continually loosing weight. I hit underweight this past week. It's official. However we don't know what this means. I am eating. I am eating well. So we are calorie counting. Ah! 😩 calorie counting hurts my soul. I start looking at all the foods and I start counting the calories. Before you know it you can't eat a chip without counting the calorie contents... But I am intaking more calories then we suspected so... I'm winning 💪 My doctor thinks I may be actually burning more calories then normal... We are running out of conclusions. So this should be fun to figure out... Dysautonomia is dysaregulation of autonomic bodily functions. I have tachycardia among many other things often. If I truly am burning more calories to maintain my weight... My gut tells me it's going to be interesting to find the bottom line of where and what is the target. Wish me eating luck, and pray for sleep! Crazy hard week is almost over -Chelle
Thursday, February 23, 2017
Right now it's down right "throwing a fit" as I say. My body is detecting the weather change. Yes. The weather change has made my body mad. Yes when your autonomic nervous system busts... Nothing can greatly affect you! My body it throwing up a fight. Literally. I have a fever. Even despite the Tylenol. I'm not deathly ill but I imagine tomorrow will be a trying day for me. In fact I just feel like my nervous system can't make up its mind. And that's truly the case. My brain thinks I'm in danger. It's sending the signals to my body. I have severe insomnia. And I finally threw in the towel. Sometimes you have to quit. Sometimes you let the toddler for instance throw the tantrum. That's what I'm doing. I am saying "okay body do whatever you are going to do... Because frankly you're not listening to a word I'm saying." I have no more tools for the night. I'm ignoring you! So I will be up having a POTSie Party! It is so fun. The tachycardia is setting in. (That's just great now I'm so super exhausted and I get to run a mile while I lay here. Well I probably won't have the energy to workout tomorrow anyways! So I guess I'll do it now while I lay in bed. #POTS.) and if you are thinking "wow how lucky She gets to workout while laying down. NO. It's like the cardio you can't quit. You don't get to stop after 20minutes. I am wasting vital sleeping time. You know when my Autonomic nervous system resets itself every night. Yeah, that's not happening. Fine body. Throw the fit. I'm done. Let's watch social media and Netflix. Sometimes it's truly crucial with chronic illnesses to just say okay. This isn't Burger King but tonight you can have it your way. You have to have a happy medium and the more you fight against it really you're just stressing yourself out further. (To a point) I can not make my body sleep tonight. So I am actually wasting energy being upset about it. So I'm going to quit being upset. I'm going to quit pushing this body to rest, and I'm giving in. For my sanity! You all know I'm a vivid fighter. I think that's been very clear. But something I want to share is, it is okay to just give in sometimes. It's okay! Don't stress over what you can't change. Ride the tide my friends. Ride the tide. Lots of love. Pray for spoons! I'm gonna need them!. -Chins up- Chelle
Wednesday, February 22, 2017
https://goo.gl/images/sUdUxT ) People who are tube fed with Gastroparesis 99.9% of the time will need to fully bypass the stomach in order to sustain nutrition. So I always fed through my small intestine by a pump that slowly pumped in formula basically 24-7.
But it's food! My diet is particularly liquids the past 8 weeks. I eat some solids but my bulk nutrition comes in from these Orgain drinks. (I can't eat fruit or veggies keep in mind. They are too hard to digest and I get sick) Also if you remember a while ago I had to go back on one can of formula a day... due to my body adapting to the special protein in my formula. The formula is made for Gastroparesis so it's "pre broken-Down proteins" So when I eliminated it and just had normal protien my body was not absorbing it right... My body was not used to regular food proteins. That was the start of another weening process. I've been on a can a day via my G tube since. That's huge! I had to pump formula into my intestine at a very slow rate honestly. I never hit goal. (Which is why IV fluids were needed. I was choosing between formula and fluids every day. So then we did daily fluids via IV through my port. We are currently off those IVS they were the first to go.) so now I put my formula not into the small intestine but into my stomach. It also is done via gravity... Not a pump... Which means I have a can in a few minutes tops. That's the same as drinking it! (Minus the swallowing.)
I just put it on this big syringe and pour it into my stomach via the gastric tube. I accidentally did not get my formula one day last week. And I normally always feel it if I don't get that can of formula but I did not feel it. So for a few days now we are on half can of formula. (Obviously if it does not work we will go back up to one can daily.) SO WHY DO I HAVE A FEEDING TUBE?! Well you guys, I could go sign the death papers. (You have to sign forms stating you understand that removing a feeding tube will lead to death and you basically wave the ability to sue your doctor for taking the tubes out. (Family as well would not be able to) because obviously if you need nutritional intervention to stay alive... You're gonna die or have severe complications by take feeding tubes out.) but I am taking my time to take it out to let my body get the fuel it needs. I don't want to drink the formula by mouth. I mean it's formula. I haven't had the gags in months. (Knock on wood) once I start throwing up I don't stop. So I also don't want to rock the boat of the pukies. I want my body to be in its happy place and stay there. (As do my docs) I also have a little hand surgery coming up so I want that J tube For one reason... Pain meds slow gastric motility for everyone ... So they make you digest slower. That's why you get nauseated ect on pain meds. I want that tube for that surgery recovery. I want to see how my body handles that surgery. Every thing down to a tiny cold or tummy bug can alter my course of disease. It has the ability to put me back in bed, change how my Autonomic nervous system is operating, it dysregulates it further. It could put me back to J feeds... So we want to have our tools for that and we want to make sure this body is ready to really take those training wheels off. Getting a feeding tube put in is very hard and most GI doctors do not even do them. In fact we have like three places in our whole state. They mentally have a hard time putting them into a person who seems fine. Also young... They don't like putting them in younger people. Basically babies and elderly patients will get them easily. But for some reason they find it mean to do it to someone like myself. I suppose nearly starving me to death in the beggining was a lot nicer?? I'm not sure how I feel about that stigma of an excuse. So feeding tubies are hard to get in the first place. My stomach is STILL PARALYZED it's just able to tolerate foods right now. It's a fight daily but it's worth it. Actually my small intestine is a little paralyzed as well, if we wanna get technical. My stomach paralysis comes from my neurological condition Dysautonomia. (That is also the reason we have this improvement in my GI function. My Autonomic Nervous System is sending the messages better to the GI tract.) So I am doing super well with the feeding and now I hope you can see the difference in the way I use my feeding tubes. In the beginning I ate through my small intestine totally bypassing the stomach. The stomach was not used for anything! I had to drain bile out of my stomach because it would just sit there. Stomach was out of order. Now I am able to literally put formula into my stomach. And eventually I won't need the formula. We are weening off of it. So that's how I eat, the changes in feeding tube uses, and why getting feeding tubes removed isn't just so easy to do as far as the getting one back in if needed another one down the road. The goal is to remove this two in one tube but it's not hurting anything. We don't want to set me up for failure by moving too quickly. I do have to make the decision in April I believe to replace the feeding GJ tube. (As they need replaced regularly) if it falls out or gets pulled out in the meantime I will most likely choose to try to leave it out and see what happens. (Yes those things happen often with feeding tubes) but also its clamped into my small intestine so no also ripping it out on purpose is not an option either lol... so there is the update on my Tubie life -Chelle
Tuesday, February 21, 2017
Sunday, February 19, 2017
Sunday, January 15, 2017
Not into the small intestine we are using My new friend the belly still. That in itself is a blessing.) #update
Friday, January 6, 2017
Well my body has slowly been declining all week. (Severe fatigue.) it got so bad I ended up seeing my doctor today. I knew it wasn't the flu or a virus because nothing symptomatically stood out. Just major fatigue. Hair loss. Freezing cold. Insomnia for the last week but sleeping 12hours a day when I would sleep... But waking up feeling like I never slept at all. I've been eating good and doing well but my body is not absorbing protein in a regular form. My formula was "pre digested" so already broke down. So, I get to have some formula again. (But it should be temporary) it's kind of like training wheels my body has to relearn how to absorb and digest some of these crucial nutrients. It has not had to, when the body doesn't do things for a long while, It needs to be retaught. Hopefully overtime the Normal proteins in foods and over the counter nutritional drinks will work. (That's the plan) but this specific protein is already broke down, that is in my formula. Kinda hard to hear, kinda feels like going backwards... But it's not. I just jumped a little too fast for my body to adapt. It doesn't mean tube removal is out of the picture I can drink this formula. Yuck but it can be done if needed. Plus my chest X-Ray is clear from when I had phnemonia in October. (When I was in ten hundred ERs being told how nothing was wrong. But I had phnemonia from aspirating during sugery for my feeding tube) I never received the news of phnemonia until a month after... When my kidney Doctor accidently got the medical records faced to her. I am feeling blessed and relief. I have full faith in my Heavenly Father. Bright things ahead does not mean bumps won't be in the road. GAstroparesis is always going to be mean and unfair. My heart hurts today. Too many are loosing the battle that's my battle too. "Don't you give up. Don't you quit. You keep waking. You keep trying. There is help and happiness ahead. It will be alright in the end. Trust God and believe in good things to come.-Jeffery R. Holland. I am playing "yeah but" ... "Yeah but my week wasn't all that bad look at these silly selfies despite the chronic fatigue..."