Temper Tantrums

My body has forgotten how to sleep.

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 

How I am eating today? Do I Still have a feeding tube?

There seems to be a lot of confusion on why I still have a feeding tube... As well do I still have a feeding tube? So I'm going to straighten those questions out & explain what is now going on in my current situation. You have got questions. I have got answers!!                                                  So Yes I still have my GJ feeding tube. I also have my port a cath. (My port will be going nowhere. That option isn't even on the table.) But as far as feeding tubes I have a tube called a "GJ" tube. That means I have two tubes built into one tube. So the G stands for Gastric. It goes into my stomach. The J stands for Jejunal. That tube goes in through the same spot and continues down into the small intestine called the jejunum. Here is a good image:

(this photo link: 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.

completely leaving my stomach out of use. Because my stomach was so paralyzed at the time putting anything into my stomach caused severe pain and nausea. It was so bad I couldn't keep a sip of water down for years. That's how I almost died in the beginning. So we leave the stomach out of the picture and put a tube in the small intestine the jejunum. The jejunum is where your nutrients are absorbed. So the stomachs job is to mush up the foods we eat. Then the stomach sends it all nice and mushed up into the jejunum (small intestine) to be absorbed. So for years putting a tube into the small intestine and pumpkin formula into that small intestine was how I ate. So why do I also have Gastric  "G" tube? Well my stomach is paralyzed. That meant I sometimes would need to drain bile out of it. I also liked the fact you could eat some ice chips or drink a little and drain it out of the gastric tube. It is a great tool. So my tube is two tubes in one.... And that's how it all worked..... Now skip ahead to today I am eating by mouth. It's been a long process and it's not over. I slowly gained ability to drink my fluids. I slowly built my way up to be able to get balanced nutrition. I then built up to be able to take medication by mouth. With Gastroparesis it's tricky because food or medicine will sit in my stomach a lot longer then normal because it's paralyzed. It can sit in my stomach for over a days time... But we seem to be doing okay. My diet is now mostly liquids. Which is okay! And a lot of Gastroparesis patients live on full liquid diets. I drink a ton of Orgain meal replacement drinks. 

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 

Phone Battle Insights

A handful of supplements. 5,000mg of sodium and 40MEQ of potassium. 16fl ounces of pedialyte & 1 Orgain left for the day (that's actually a lot left at 5pm) all of my supplements are hard on the stomach and the Gastroparesis isn't going to ever be in my favor. I am not sure if I already mentioned but my autonomic ability to regulate my electrolytes have been poor. It is normal for a POTS patient to need sodium but I am a super POTSie when it comes to dysaregulation and my kidneys don't balance those electrolytes out anymore. I do it for them!  But just a few short months ago I was pumping all of this into my small intestine in my sleep. We are making progress people! He never said it would be easy he only said it would be worth it! I may be queezy and a little dizzy... But I got this! (Eating/drinking to fast will cause a POTS flare. This is due to the poor blood flow in my body. Basically all the blood will go to my GI tract and not my heart or brain.) I'm really getting this balancing act down... It's simply day to day is different. I wanted to share though I've made strides, struggles appear daily for the simplest of things. Today i choose to be grateful for the ability to drink and take supplements by mouth, I am so happy for this gorgeous weather,  I'm happy I could drive and get some tasks completed, I'm even grateful for my crazy hair, & I'm grateful for my Grandma for it is that beautiful lady's birthday today! I'm pretty fond of that lady!  I love her a lot! And heaven knows how lucky I am to have her in my life! She is a blessing in my life. She isn't just grandma... She is a good friend💕 life is a gift & one I won't ever take for granted! I'm still trying to get doctors to be in touch with me...

(These things are their ideas and they want to talk to me... They give me instructions. Literally. But their staff won't let me through... This phone call thing. Not my idea. If you live chronic you know the phone struggle is real! I am thankful for speaker phone! Thanks to that I was able to be on the phone and make myself look like a person at the same time 💄 I did end up wanting to pull my hair out after more wasted phone time but I decided to just let it be. It is hard to spend so much time doing a repeated task. But the task is vital to my healthcare, so I will square my shoulders and keep trying.)  If today is too rough try tommorrow 💕I know I'll be back on the phone in the morning. They refer to us as patients because we are really practicing out patience. (Wink) chins up lovies. You too will get through -Chelle 

Picking it up

I have decided I am picking up this Blog again. I am doing so much better & In so many ways. But my story is not over. Sitting in Church today I realized something... I only showed the hard times. The stopping of the posting has in fact not shown the miraculous moments in my life the past few months. The moments of pure tender mercies. The moments of amazing strides. The moments of fear. The moments of hope despite it all. I'm not finished. I've only begun my journey. Life with Dysautonomia is still hard. I still have many struggles. I look fine but I'm not always "fine" my tummy is so much better it thrills me! But it will still be a battle. In fact eating is a whole new battle all on it's own. I work hard to get daily nutrients packed in. I work hard to perfectly balance my electrolytes and hydration. All things my body should be doing on its own. My doctors work hard to keep me going. They are trying hard. They are giving me their everything... They have hope and they definetly do not want to see me fall backwards again. Heavenly Father gave me a second. chance at this life. It will be hard. It will be difficult. It will be different.(for sure) It will be worth it. I have a sign from a conference talk many years ago "come what may and love it" There were days I wanted to burn that sign. I couldn't have imagined the horrific days I'd encounter after I loved that talk. But it was always there in my room. A reminder from above to "love the situation". I did not love the situation at the time. I rather hated it. I wished it away. All I wanted was to be "normal" again. What I did not know is normal is overrated. I have a gift to be different. I live the complex life of 0 to 60. I go from fine to not fine fast. I battle those days. For now I am still doing basic treatments for my POTS. Nothing new has been added. They are finding new research and doing studies on autoimmunity and POTS. I do believe to be an autoimmune disease which will open other doors for future treatments for me. I still struggle with my many other medica conditions. But I work hard and do what is needed. Because I am learning how to help things to not become gruelingly out of control. The doctors are working together and learning what not to do best they can.  (There are so so many unanswered things) But I have a freedom I haven't had in years. I'm one of the lucky ones. I get to eat again. I still have my feeding tube and I still have one can of formula daily. That tube will come out when I am ready for it to come out. It's very hard to get a feeding tube. I almost died the last time and I won't be put in that position again. I still take it one step at a time. I have new goals that are in the future and I am choosing to be proud of my battle scars. Including my protruding port. (The one battle scar you can visibly see) I have been through tough times and odds are there will be more tough times ahead. I am chronically ill. In a hard fashion. But I have a view that only heaven could provide through these hard, broken, loose everything moments. I couldn't recognize myself at one point. Why did this happen to me? How could these hard horrible things happen? Why did I have to lay in bed in misery for years? Why did I have to almost starve to death due to neurological stomach paralysis? I know why... Because I am lucky. I was given those hard times to provide me knowledge. To humble me. To show me just what life what truly about. The pain hurt but it was worth it. I am human my he'd gets in the way and I have to remind myself of these lessons some days. Other days the reality hits like a ton of bricks. Would I go back and do it again? Yes. I had life mapped out. I had a future. Life was good to me. I slowly progressed and rapidly progressed to decline my health in so many ways. I was handed many hurdles I medically could not handle. My body failed me. But I never quit. Even when doctors told me to quit. I could not. I prayed and I would receive answered and I did my best to follow them. I did not have answers for years. My body weakened against the rapid disease that only worsens without treatments. I still do not have a for sure clear answer. I have Dysautonomia. That means my nervous system is broken. There is no guarantees in Dysautonomia. It's a flip of the switch condition. I could wake up tommorrow totally different. But I have a strong faith that I won't. Don't quit! Whatever your struggle is don't give up. Keep going. Crawl when you can't walk. Kneel when you can't stand. Buy a wheelchair! (I did) order and IV pole for your house. (I did) Whisper when you're too fatigued and too tachycardic to talk. When you body is running a marathon sitting still. Be stronger than it. When you can't eat and feel like giving up. When you throw up for hours until your throat bleeds and your face couldn't possibly hurt any worse. If a feeding tube is the scariest thing in the world to you right now. That's okay! But I promise you will overcome anything that's ahead of you. Even when you honestly don't want to...And when Heavenly Father tells you to prepare and you start miraculously feeling better... When you least expected it. Go fly! He said I'd have a better quality of life he never said he would cure me. That's something I am seeing, learning, remembering. Chronic is my life. New and old. But there is more to come then just chronic. Opportunity is at MY door. I have climbed my mountain and my faith is strong. My view is clear. I shall not fear. In rain or sunshine I'll be just fine! Heaven is here that I know too. Heavely father has shown me so much from up here. This view is so very crystal clear. I had a heavy broken heart from the start. I did not want I do this. This was not how I was going to be. How could life like this even be a possibility? But you know what I learned through this crippling journey? Just how lucky and blessed I truly am. I'm so thankful to have a loving Heavenly Father in my life! I'm thankful for the broken times. I'm thankful for the tears. Because now I see what happiness is! It's through Christ. We have a plan eternal. It's what we do with it that matters. How we choose to be. I know things always worsen when you think you can not possibly handle anymore. (By the way Heavely father will be there. He will as he promises.)  But just let that heartache grow you. Let it mold you. I blogged a tender mercy years ago! Heavenly Father himself told me "I would be okay". And I am!  Go climb that mountain! And rest in faith. He is there always! So "Pray he is there speak he is listening" just do the best you can do. But breathe in the fresh air, jump in the puddles, and learn when you walk that when you fall you just brush yourself off... step by step on the trail ahead. Look up love. This is MY story and I am still writing. Heavenly Father reminded me just what I do have to offer the world.-Chelle 

Milestones through the looking glass

Today is a BIG day!

I finally have decided to be brave enough to box up my port supplies. I have not been on daily ivs for many months now but it's just been a little too nerve racking to box it all up. (And I haven't been able to take the time to conplete the task of boxing up port/ IV supplies (along with that task comes completely reorganizing all medical supplies and storage.) but though honestly my last week has been my roughest in months ... I choose to be brave! Eating was rough this past week. Part of living with Gastroparesis is times of uncertainty. My body has been more nauseated and I'm not hungry. I also am getting full easily. So force feed. I did not give up last time... I did these same things they simply did not work then... It's in the Lords hands, that I do know. So we take a deep breath and count our blessings. Enjoy the moment and rejoice in the good! God is oh so good! I will rest in him. Hopefully more supplies will be boxed up soon!! "It might take a year, it might take a day, but what's meant to be will ALWAYS find a way."-Unknown. Heavenly Father has been telling me to be strong and courageous and that's what I am doing. "& I am not my body" is this year quote. If anything it's something I have learned this year. Though it's not always that simple I will do my best. Keep going! Two years ago TODAY I had my first NasoJejunal tube placed.

(Because I have Dysautonomia and it gave me Gastroparesis). I didn't know this until after I boxed up my port supplies. Crazy the reference of time. I did not know those feed rates would stay low for years. Leaving me with the only choice to also add daily IVS through a port to drink. Today I boxed those memories up with hopes they stay in that box. I never would have guessed getting better would ever be in my path. Not a six months ago not a year ago. Not two years ago. Who knows maybe this will last a year or six months. But something nothing can take away is the knowledge that my body can Improve. End of story. Don't give up on yourself ever! No matter what battle you face, let God help. You. He will be there even when things are ugly and not going your way. You are too precious! Chins up-Chelle (I am still on formula. I think it's helping. Had to cut back to half a can because I was getting sick but my theory is half a can is better than no can... And I hopefully can bump it up. I am eating by mouth and drinking. I am putting the formula into my stomach.

Not into the small intestine we are using My new friend the belly still. That in itself is a blessing.) #update 

Protein Saga 2017/updates

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..." 

My first dilly bar in years.... (This was this week) 

 Life is good. Ride the tide-Chelle 

I'm not my body. I'm blessed.

I have started many posts over the past few weeks. They haven't been finished. They have not been published. Partly because I'm busy rebuilding my life again. Partly because I'm living, soaking up the good. Partly because I'm nervous. Pary because I don't know what to exactly say, I start writing and end up on a totally unrelated topic... Partly because I don't want to jinx it, Partly because of guilt that I am feeling so much better while many of my friends endure these hardships. But I know God has a plan for me. I've been taking "Michelle time" but My friends are not forgotten. I carry you all with me in my heart. I think of you often during the days. I talk to many of you still. I love my friends who know what chronic and disabled feel like. I'm not going anywhere. I am still here, just not so many posts. Please, never hesitate to message me or contact me! If you are a complete stranger I don't care if you think I can help, offer advice or be a friend to leans a listening ear... I am here! Please do! I talk to people all the time... Mostly strangers through this blog. That's what I want is to help people. I'm any way I can offer it. So please don't be shy. I've had strangers offer me help years ago... Messages are still checked regularly and will be!! Today One of  My few favorite doctors turned a rough time into a bittersweet time. I am going through treatments. Sometimes treatments make you worse before they help. With that comes tunnel vision of pain. But with that I have been able to cling to reading scriptures. I have been even closer to My Heavenly Father. I've been listening more openly. But I am stubborn. I am not patient. I want to fix things on my time. And I always have been that way. It's been a blessing for me truly. I've done so many things other patients never do. I've taken initiative of my care & have a sassy attitude of get on board or I'm going to find someone else to help me. (And I did) But life has been oh so good to me these past few months! I know it's Gods healing. Not one single treatment has changed. Something literally clicked for me. My doctors are thrilled yet scratching their heads. (Well I am pretty complex so that confusion is nothing new... But good confusion is a nice change.           of venue!) this blog will remain up. I started this blog with a strong prompting years ago. I didn't even know what to blog about in the beginning. I just write what's in my heart or on my mind. I feel prompted, I post. I try to educate. I have tried to share my story to help the thousands of others find help. To know they are not crazy just because a doctor thinks so. My crazy condition does exist. And that there is hope. We all have a plan eternal. Tonight my heart feels like sharing a moment...

Mom says, "That's not how a feeding tube works" haha 😂 I was trying to prime the tubing, without setting it down. (that's my extension that clicks into my feeding tube when in use.) No worries just flushing the tube to keep it unclogged. We are still doing well. happy to announce All food by mouth. All fluids by mouth. All sodium by mouth. All meds by mouth. I'm feeling blessed!! I still have #gastroparesis. It's a struggle to eat a lot of days. I still have nausea, feeling full after two bites, which results in force feeding, my belly bloats, my belly hurts, my stomach spasms due to being paralyzed, I drink a lot of Orgain and I try to be careful to not cause a flare.its a fine line. I am constantly learning what works for me. If I can maintain this nutrition by mouth... in time tube removal is in the future. Though, I do not have a timeline and I won't push one. Tubes are good when you need them. It took a lot to get my tubes (it about cost me life). I of course want it out but I have to be wise too. It's not about how fast you win the race it's about crossing the finish line. Dysautonomia is complex tomorrow, next month, or in ten years I may need to be tube fed. But tube feeding & having a feeding tube is NOT the end of the world. It does not define You! I am enjoying the blessing of eating. And I am holding to my faith that Heavenly Father is in fact opening doors for me. I'm not cured but quality of life is seemingly really improving. You better Bet I'll take any step forward. Moving forward brings more trials and lessons. My plate keeps growing. I am still chronic yet working on new goals too. You better bet I am not quiting now. You know I don't give up something in me never gives up (a blessing in itself) We pray for healing. We hold hope. And I am doing my best to listen to Heavenly Father. I'm not cured. I still have and will have struggles. But I am in fact not my body. And that's a priceless lesson I have picked up this week. Doubt your doubts before you doubt your faith. Be brave and have courage! You are not your earthly limitations. Your friend xo-Chelle p.s. Crappy Coffee (decaf, as I have barely slept in three days and have tachycardia #Dysautonomia) still brings me happiness. The simple things in life folks. The simple things.