Saturday, April 29, 2017

One Year & A Day! (Final tube decision)

A memory crept up on my timeline today...
What a difference one year can make! I was so sick and I never found help. I also never found answers. Now we think it is POTS that causes these fevers. As I still get them sometimes. That was a month long fever that wouldn't break. I also was on immuno suppressants so that meant thought the fever wasn't appearing super high in my case it was super high. I had my port all the time for IV fluids and j feeds... I had lichen planus all over my face. My immune a system was attacking me for sure. And was still just so sickly! I had been in over 4 hospitals and hospitalized. No answers.
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)
moving forward!! trials to triumphs. Love love You all! -Chelle 

Friday, April 21, 2017

EDS?!

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! 
We Got stuck on the freeway (they ended up closing it and kicking us off after thirty minutes, prayers for the people involved. Must have been very bad to close down the freeway!) I almost missed my  second appointment #yikes! I get to take a week break from those treatments and start again because well it's tough and my doctor feels a break is needed. So I am taking  her up on My break and hopefully some horrible pain will go away for a few days. (I get a 7 day break) The treatment long term should have a really good pay off. It's simply getting there. Then my Neuro went well. He isn't sure of my hand but does think I could have a pinched nerve in my neck. He says let's wait and see what nerve conduction study shows and we will go from there. We may do another MRI (yay my millionth. I should be glowing from all the radiation I have had)  When I asked,  "If that was the issue what we would do?" he said, "the less we possibly can in your case. You finally have life to You we will not do anything to mess that up." He also reminded me how careful I must be to not get sick in anyway because of the possibility to change course of My wellness with Dysatuonomia. (Good idea) I just want to put a reminder out to everyone that if you are sick... Seriously stay home! So many people are chronically ill and a cold or the flu is a really big life changing event for us! And look at the photo above I look perfectly healthy and fine. You'd never know how fragile my future health truly is by looking at me! He examined my neck and I have been Re-diagnosed with EDS A.K.A Elhers Danlos Syndrome. I was diagnosed originally when I was diagnosed with POTS but current neurologist undiagnosed me when I started seeing him. I suppose I don't have so much going on now that other things are going to be more obvious and prevail. EDS clusters with POTS. I was skeptic I could have EDS so I am not super surprised. However I really don't know anything about it besides it is a collagen disorder. It causes hyper extension of joints and other issues but I know very little.(that's the part I don't like not knowing and having my answers to my questions.)   So um, well I honestly just don't know what to think yet. He said I've been living with it for a while so I know what it's like... (I guess I have research to do) He is putting me into physical therapy for my neck as well but he isn't sure when just because I am already in therapy and he wants to look it out more. I also am going back to follow with rheumatology to see if they can yet again figure out my untied ends to my tests reaults of SjΓΆgren's Syndrome. I put this all in the Lord's hands "Come What may and love it!" Faith. All is well minus some little things! That's the way we like it! Well! -Chelle 

Monday, April 17, 2017

6 Months

Today marks 6 whole months without ANY ER visits or hospital stays!!! And no actual vomiting!! And by no actual vomiting... I mean no wretching my guts out for hours on end making my throat, esophagus, nose bleed while breaking blood vessels in my face. Those vicious cycles are the worst. I make doctors panic. With no releif on all we can give. Not fits! (Nausea is life but hey I keep things in we are good)  What?! I'm blessed! Here's to another 6 months (fingers crossed) well I most likely will have a procedure for feeding tube soon but hey that's a short hospy stay for procedure! (Well maybe I shouldn't say that i aspirated during my last tube surgery and got phnemonia that three ER visits never could find... Then I found out a month later I had phnemonia from my nephrologist by accident. She got the wrong records! Boy was she upset!! No one ever told me that I aspirated during surgery!)  Hope ALL had a healthy Happy Easter Sunday! So thankful for my savior beyond measure-Chelle 

Wednesday, April 12, 2017

What You Aren't as Cool as Me?

What,You can not do tricks while typing?
I can eat hands free, a fully rounded meal folks! (Travels today left it hard to get all the nutrients in) but hey we bolus! I am so much better with my GP! I am eating well still and managing well. I see GI in two weeks to go over tube options. I'm a picky Tubie and I know what makes sense, oh and what I want! A G tube. I'm not ready to have no tube. That's out of the question for today. But I'm ready to step up to a G tube... So I will feed into the stomach and not the small intestine which has been bypassing my stomach completely all along the Tubie days. Making progress! I do a lot of mushy liquids. And I'm always feeling like I'm tweeting my diet to get what is needed in better. It's easy to lean on empty calories but it's not good for a GPer to intake empty calories we can't afford to loose the nutrients. So I am trying even harder to squeeze nutrition in me daily. Orgain is my game. And I do still have Gastroparesis it simply is being more manageable at the time. (I know there has been a lot of confusion on that. I am improved but not cured. I can prove it because I just found food in my stomach from 6plus hours ago. And your stomach should fully empty in two hours. Could be why potassium is dipping because nutrition dies off after spending so much time sitting in the stomach where food is not absorbed.) since I have neurological GP it can improve and also get worse so we pray and do the best we can... And enjoy the good times with faith they will lastπŸ’• The good times like today, eating at our "place".
I've been seeking the treatments of all kinds of kinds for many years now at St Joes. (And a bunch of other places but currently we have been at St joes for my Endometrosis & pelvis. If You are newer I don't speak much but my pelvis was a trauma case injury due to my disease being so bad and untreated. My body turned freaked out So injury occurred  and I Was in the same shape as someone crushed in a rollover accident minus broken bones. I had three years of physical therapy. And I am back into therapy again since my last surgery irritated the injury. #wompwomp. It will be better again though that's the good part! My Endometrosis had also gotten more severe they found in my last surgery making it harder to treat. It's treatable just more pain for me. I have the best doctor in the world no joke! and now one for my hand too. Anyways!  We always would go to the Park Place Deli. During the good, the bad, and the ugly times. We have to eat. And sometimes there are windows of time to kill... We like our place because it's cool and it reminds us of New York! Today we sat outside and I ate there for the first time in years. For a few years I couldn't eat there just watch. (But I still very much enjoyed the atmosphere) That place is near to my heart. It's dressed up some rough times for me. It's been a place of rest and distraction in some trenches of my battles. We just stumbled across it because the Hospital Front Desk lady gave us a list of places to eat near by one day... when we were newbies... And we were starving! It's really an amazing feeling to be able to eat there again...it feels so blessed in my heart. Today I saw my new hand doc/surgeon and I do NOT have to have surgery because my ganglion cyst has gone away (all while waiting to see a new doc, the old doc did not send my records to me after weeks and therefore I had to get new X rays... That showed my cyst is gone!) but the bad news is I have to have a nerve study on my neck because something seems wrong with my hand still. He bent and messed with my hand and wrist for a long while. (A good doc) He even cared that I fractured it once in my Dance days but he looked at imaging and that part looks perfect (more good news) I have some numbness and pain...  but I think it could just be my Dysautonomia. This doc was extremely thorough and thinks their is more to the story. (Which does follow all my other Heath issues). My pelvis surgeon sent me to him and he operated on her. So I figured if he could operate on one of the countries best surgeons ... Well, he could take care of this handful! He was not afraid of me. He also was really nice and answered my kagillion questions I always have. (He showed his students a few things so of course I needed to know what was wrong with me that we were showing others.... Lol. He graciously explained I have very odd weaknesses in places. I left it at that assuming it's Neuro related. Or Michelle related.) He was very good. I felt safe... I was thrilled to not have the need for surgery! But then about ten minutes after I left, I realized I probably have some weirdo nerve issue that will not be fixable and a pain in the neck! (Nice pun) we will do the testing and I will return for results. We will go from there. Luckily I see my Neurologist next week! I am intrigued on his opinion on all of this... I have been complaining of neck issues for a year or longer now. It's been brushed off. It could just be weaknesses. (Now this info is Dr Me.) My body has been fully deconditioned and I have reconditioned it but... You know maybe the neck didn't get the TLC it deserves. But I am having a hard time holding my head up. I have been feeling unstable in my neck. It also seems to be bending more then it should be able to. Maybe I'm loosing my marbles but I'm typically right when I think something is off... And continues to stay off. Hopefully it will all be easy to find some answers  and easy fixes. If not I will trudge along like always. One day at a time. "Im not medically complicated, I'm medically interesting" potassium I have upped and we will see what my labs show. Luckily the pills are allowed but I may not be able to tolerate them they warned. But I will.  I feel like things have been falling apart because I've been in a lot of pain and I've gotten to see doctors this week and my mind is at ease again and I'm feeling calmer. I have fallen backwards a little bit but it's temporal and not my Dysautonomia. I just have a lot of medical conditions that like to annoy me. Getting all my ducks back in a row again.  I just felt like updating everyone a good update will the info. Lots of love-Chelle 

Thursday, March 30, 2017

Invisible Pain Day Tasks

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 πŸ‘ 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.
I ended up having to climb in my cart to get my Orgain as they place it on the top shelf. I always look for a helper but they are never findable when I am buying Orgain lol so I improvised. I shouldn't be climbing in my cart. I know. But I got it and felt rather like Wonder Woman. With severe tachycardia.  (I'm contemplating asking a manager if they could move it on the shelf since I am most likely the main buyer lol)  I then got some more essentials... Ginger ale, juice, canned mandarin oranges, & bananas. That's when I realized I basically must be having a rough week to have a cart full of liquids. But I'm not sad or mad. In fact I am so grateful even when I basically go through phases of full liquid diets. It's all good! Like truly my heart is full. I eat by mouth. Some adjustments are made at times but I have not just overcome this challenge I have learned how to balance liquid nutrition. I also have been really feeling like finding and trailing more foods to eat. Especially drinks/smoothies/blendederized foods. Gastroparesis is truly a condition that weens and wanes You simply roll with it and you just ride the tide. Also going to the store to get some groceries made me feel normal again! (Like the little things folks) I also had to get gas in my car for my trip to therapy tomorrow and go to the pharmacy I think for the 3rd time this week! All with very high pain. My days are filled with a lot of medical things. And these things most people don't know or see. I have an invisible full time job taking care of my body. It's true I spent the whole day Monday on the phone all for medical. My GI did contact me back (well I contacted them back they never called me back) yesterday, and I will see him the end of April to go over options... I don't know what my options are with him. (I kinda question if he believes me because he didn't the last time I saw him) but I know I am the boss and I will do what I think is the best for me. (Which I think I already have that plan figured out) I am very concerned my current feeding tube is going to fall out like my old one did. I just keep having this instinctive feeling about it... I don't like that! I have been trying to get a g tube to have on hand at home for just incase...(tubes wear out. They have to be replaced regularly)  Because if I loose a tube I have to go to pheonix and then my stoma would close up and I'd need to have it recut. Which would mean surgery. Most people have G tubes on hand for this reason. People that only have G tubes also can change out their own tubes at home. Unlike a J tube that has to be surgically placed. I wish they would order it and get it to me because my GI agreed to this 6 months ago. But he is "busy" now and that's his answer for everything "I'm busy".  Hey I am busy too!! So this situation makes me nervous! If I do loose this tube and don't have a back up plan and get pushed backwards. It won't be pretty. I don't like fighting with doctors or being forceful to make them do what they say. Bottom line this tube is worn and needs to be replaced... Anyways just an update on the GI tube situation... Time will tell all.
In the meantime I will enjoy what I can and be happy. Bask in the sunshine! Despite the wind -Chelle 

Thursday, March 23, 2017

Gastroparesis choices?

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 πŸ’• 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... 
&
& This silly Dog and I 
 
Gastroparesis is having a kitchen full of food, feeling starving, & having no appetite at all... All at the same time. I started this hungry thing last night but nothing suffices. So I keep sipping Orgain. I had breakfast but I don't think it's absorbing fast enough. It seems to just be sitting in my stomach. It's always such a strange thing when you are starving but your body doesn't really want anything. Yet it wants food because it's telling you it's hungry. And then you realize your in the middle of a bodily fight.  Either way I loose. If I eat too much and give into the hunger, I will get pretty sick. If I totally ignore it and give into the lack of appetite I loose nutrition... That I clearly need. Hey body? don't you see my efforts today? Nope? These are the days a feeding Tubie isn't so bad... I can have formula and makeup the difference. With what is going on I am going to be talking to my GI. I want to have a Gastric mic-key button on hand. April is 6months of having my current tube. (G&J) At 6months my last tube literally broke and fell out. I had to drop everything and be taken 5hours away to a hospital equipped for me. I was hospitalized because I could not take any meds or eat by mouth then... I also took the whole summer to regain feeds and I got very weak. So the time has come for decisions. I've been thinking on this for a very long time & I think I have made it. Going to see if we can go from a GJ to just a G tube since I still use formula daily into my belly. I keep pushing forwards. I will get there. I've already made major strides. You guys it is truly miracles. I credit Heavenly Father. He told me he would make me better and He sure has stuck by that! He did too say I would not be cured & I am not. But what I am is very grateful!! Just what 7 months ago... I was drinking though my heart via IV fluids/Port daily. My J feeds were so low... And now I eat food by mouth and use a can of formula to supplement (but it goes into my belly) that's so huge! The formula is full nutrition that I struggle to get like veggies and fruits. I can't digest them. So I have to supplement those nutrients. We are moving towards just Orgain as its a replacement. But I am still formula weening.  I think the best option is to move to the G tube because it gets used. The j hardly gets used and I think it's time to take the training wheels off... Plus if I have a G tube on hand I can replace it on my own. J tubes have to be done under surgery as they go into the small intestine. So if this GJ I currently have breaks (the g tube would be a great backup plan that shouldn't push me backwards at all) and the G tube leaves me with a tube and keeps my stoma open if I need to return to a GJ in the future.(stomas close within hours) I think some time with a G tube is a good solid plan. I put the calls into my GI and we will see if He agrees. That was a big deal for me to make that call today. A very big move. Moving forward in faith not fear! I have some anxieties. I also scheduled to see another hand surgeon today (fingers crossed this one is the one. Surgery is so tiny My health conditions not so tiny) I'm excited to keep moving forwards. Prayers, faith, hope, & spunk will get you through -Chelle 

Thursday, March 16, 2017

Thinking spot

I had a rough & tough week. I had big POTS flare up. (I haven't don't this in 6months) but I have been praying for guidance and I took matters into my own hands and changed things up and it worked for me last night. (That sweater is so true #bless this #mess! Especially this week!) 
I finally slept. I woke up a whole different girl. I'm alive again!! (Phew, that was scary I won't lie. But I kept praying, I kept trying) so today.... One of my favorite things to do is enjoy a nice car picnic. (If you don't know what a car picnic is, it's when you eat in your car  in a simple spot.)  My thinking spot is My old stomping grounds. We grew up there. We spent summers there being free and happy as bees! Dirty feet, water, sunshine, fun.  It makes my heart smile. It was simple times and it's a simple place that always brings happiness. You can feel your childhood calling you! So I go eat my lunch there and enjoy the pretty outside. My body can't always do the old things. Sometimes I can't physically take a walk or go outdoors but I can always go back sitting in my car. I can still enjoy the view. I can still go there. I can still sit and ponder. That I am thankful for. I'm thankful for bites of food, iced tea, fresh air, sunshine filled blessings! It's the simple things in life-Chelle                     Oh yes, I gained a good pound and a half! I had my three week weight check and I gained!! So I am not technically underweight today! That's a happy ending dears!πŸ’• 

Monday, March 13, 2017

Scuffed boots

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

Speaking Up Port 101

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 time again

It's Endometriosis Awarness Month.
I've been through many different treatments. I have gone through 3 surgeries to remove Endometriosis. I also have had the nerve that sends the Singal from uterus to the brain cut. That did not work. My pelvis is injured from the Life with Endometriosis. I have seemed therapy for years. I will have future surgeries for Removal of Endometriosis. I've also had Botox injections twice for hopes of pain relief. (Due to my now known case of Dysautonomia that's not an option.) I see top surgeons in the country who only specialize in pelvic pain. They have been true lifesavers! I suggest finding a pelvic pain specialist! They have a lot more resources and are so much more advanced them a typical gyn. (No joke these people changed my life for the better!)  The only option to "end this" would be to do a hysterectomy. I am 24. A lot of people think getting a hysterectomy is easy. It is not easy. In any circumstance. Especially at 24. I've had Endometriosis for ten years now. I'm not totally sure I believe hysterectomies are really a fix. Sure they help but is that really the best idea of a cure? Millions of females start this painful disease in their teens. I was 14, when my symptoms were unbareable. You can not have a hysterectomy until after a certain age. It's too dangerous. Teens shouldn't live with this mess of pain and symptoms. I don't see that as a treatment. The only other option is hormones. To regulate the bleeding. Women with Endo can bleed for months at a time. These horomones do not always fix that either.                
Today I picked up more "horror mones" aka horomones. To add to the ones I'm already on in hopes of future relief. I tend to do poorly on these and have a lot of side effects. Some unbelievable. I'm always nervous to start or try new ones. I mentioned after my last surgery in July that they found my uterus is enlarged and soft a clear indication it's full of Endometrosis. It's so enlarged it appears the early stages of pregnancy in size. (But it's simply just full of disease) On one note I now understand why ultrasound techs would be so mean to me when they ask the famous pregnancy question during ultrasounds to check for ovarian cysts... I always wondered why they were so harsh and glaring at me like I was lying? I was not lying... And I had these tests in high school and they were so much more calm. (Well that situation now makes sense) However they can't do anything about it... The only way to know for sure is to do a hysterectomy and send my uterus off to the lab. (One day that will be done) it's not dangerous nor does it effect pregnancy. But it does cause me pain.  Endo is no joke. It's painful. It grows on your organs. Yes my organs. Vital organs get covered in disease. It causes debilitating pain. The only way to remove the disease or manage it is to cut it out... In some cases that even means cutting out or removing pieces of organs such as the bowel. It's not just cramps. Learn the more @ http://www.endochallenge.com/2017 -Chelle 

Tuesday, February 28, 2017

We Can Change

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"
You can change. Don't give up ever on your goals! 
Chins up Dears-Chelle 

Sunday, February 26, 2017

Thoughts in My Brain from Yesterday

Before church my tummy was so angry. But I preserved  and church was great! I now am drinking some Gatorade to replenish. (I have seen many POTSies suggest using the Gatorade powder and add extra powder so you get more electrolytes) I tried it out and I have to say it is Wayy too much sugar! And I think I will stick to my unflavored pedialyte and juice. I personally don't recommended this Gatorade powder trick. I'm so fatigued. I do drink Gatorade and Powerade on occasion but I tend to always stick to my pedialyte. I did sleep last night (Saturday)  & when I woke up.. I was very disappointed to find an angry body. It was well rested, but the physical stress must be too much and has caught up. I'm tired but I'm happy. I feel so blessed to partake the sacrament no matter how nauseated. That was such a frustration for me, not being able literally physically to even go to an hour of church. It was hard and I felt guilty a lot of Sundays. But as I prayed Heavenly Father told me he understood My efforts. That it was okay & he knew I'd try to muster up some sort of Studies, and mostly conference talks on Sunday's. My efforts were not unnoticed. I don't think anyone ever thinks that one day Church could literally not be an option. Due to physical impairments... But it does happen. I can say General Conference gained a much bigger love during that time!  I feel blessed for the little but big simplicities in my life. Like attending Church. I had a trying week but a good week.
I restarted physical therapy, I had a VW picnic, I got some sunshine. I seem human again. My progress can be slower then I'd like at times but I just have to rely on My faith. Then that means I must work on My patience. Keep smiling, Life is good-Chelle                                                  (I would like to add a side note: sometimes I see some very disappointing posts on Social Media. Poking fun at people's weaknesses. I know memes are funny. I've spent many nights with insomnia reading them and giggling. But there is a line to be crossed. There is a difference between taking a photo off a movie or a clip, using a cat, and using a real person's real life post... as the tail end of a joke. Yesterday, there was a viral photo with a severe skinny malnourished teen. It poked fun at her anorexia. It called her "stupid". Anorexia is a disease. That's not funny nor okay. Her struggles to eat are not a joke. How do You think she is feeling after the photo she posted went viral as a joke on her illness? (Wether she is taking action of care or not. She is clearly struggling.) For all any of us know... it's not anorexia it could be a different disease. One she has no control over at all. I was called anorexic by many medical professionals. Meanwhile I was slowly and rapidly starving to death. I had a paralyzed stomach. No matter how hard I tried the docs wouldn't interviene. Thankfully Heavenly Father guided Me when I wasn't sure if I was really overreacting, or if My specialist was brushing me off. So after not eating for 3months. I went into my appointment and demanded blood work be done to put my worried mind at ease. (She claimed I was fine.) Heavenly Father warned me the night before in prayer to work fast. So I got upset and I remember begging for these labs. She refused. And I left in tears and promised I would never return. (I still have not returned) my PCP the next day started tube feeding me via IV. I was severely malnourished. I did almost die of starvation. So when I can see a physically ill sick person. Who is starving. To the point I can see death is too close for any comfort. It is not funny!! Starvation is truly miserable. It effects everything in you. I remember it felt like my brain wasn't even working. It was physically & mentally draining 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

The end to a under slept, under kept week!

I've slept for the first time in a few days! πŸ™Œ 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 πŸ˜‚) I learn all kinds of things just being Michelle!
I did get to restart physical therapy this week and I am ready to heal! The phone saga continues... Still working on getting through to my doc. But she called me today but I was asleep! (It's Saturday. But what an awesome doc to call in Saturday!) She has not received a word of any of my messages. Her office even told me she took care of it... I was skeptical. Because nothing had been done... It clearly was not taken care of. So I got office blocked again. She will call me Monday. And I will be letting her know I did not forget and did MY part... And the things her office have told me over the past few weeks that clearly were not true at all... I've been calling for two weeks! Being chronic is relentless. I'm going to rant for a minute. If you work In a medical office. Some patients believe it or not... Know what they are talking about and doing! We exist. I know not all patients are like me. Some are foolish... But we who hold knowledge do exist.  My doctor really did tell me to find the name of a medication I previously was on, call her office, leave the message, & she would call me back to talk. She really did say She was going to call me... I did not make that up? We had a plan... But bottom line  I was blocked. 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 πŸ’ͺ 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

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 

Wednesday, February 22, 2017

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 

Tuesday, February 21, 2017

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 friendπŸ’• 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 πŸ’„ 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 πŸ’•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 

Sunday, February 19, 2017

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 

Sunday, January 15, 2017

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 

Friday, January 6, 2017

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