Wednesday, December 28, 2016

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 πŸ˜‚ 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.

Tuesday, November 29, 2016

Tender Mercies on a Page

Frustrating treatment battles. But In the end I hung up the phone. I closed my planner and it oddly did not close. This is the page that was opened. (I have never seen this page until today.) thankful for those tender mercies! Love this quote! Keep going with faith-Chelle 

Sunday, November 20, 2016

Miles & updates

"I'm gonna walk 100 miles, I'm gonna whistle all the while if that's what it takes to make me smile. I'm gonna walk 100 miles. I'm gonna run right up this hill summer skies or winter chills. If I gotta take a break I will. But I'm gonna run right up this hill. I wanna hold the whole wide world right here in my open hands. Maybe I'm just a little girl. A little girl wth great big plans!" -Mindy Gledhill (I have a goal of 100 miles in 100 days. I run most of them but I get them in daily! It's POTS treatment protocol to do cardio) Today was a chronic day. The weather makes me tired and achy. I did not want to do my mile. (Even walking one just was not my cup of tea today.) when I woke up this morning, I woke up a bit early. So I took to Facebook to find out yet another Gastroparesis warrior had been taken today. It always hurts to loose      another fighter. It makes me reflect on my life. Though, I am so thoroughly blessed and have had major life changing healing... It makes me realize even more how many really do not get this chance. They loose the battle. My battle. So though I felt tired I did my mile because I am ABLE to! Today, I am able to eat by mouth and workout. I was able to take the sacrament and attend church. Tonight, I did my mile for all of those who can't. This one is for you guys!! Fly High πŸ’š I am SO very blessed and My life is full of love and cheerleaders. Thanks to all my cheer leaders because it's so touching to see how loved I truly am. Thank you all and lots of love always- Chelle        
   (Neurologist is pleased with my improvements and we will continue down the path we are on. We will hope, pray, & hold faith as always. I am better and I know it's God. My doctors are a little baffled (in a good way) but it's God and I know it. So I will enter this new avenue and see what's in store for myself next.) 

Wednesday, November 9, 2016

Condolences, a thought, & a prayer

So many emotions in one little world... I haven't said anything. But I feel compelled to. Yesterday (Election Day), one of our amazing, brave, & sweethearted officers was shot in the line of duty. I did not have the honor of knowing from the only things I hear... One spectacular person. A true big heart. Thank You for protecting Me officer Reed! πŸ’™  So I ask that you keep his sweet family in your prayers & of course our SLPD. (as well as all effected) It's heartbreaking to me. All this election stuff matters, it does. But in my hometown what mattered yesterday was what happened. Another innocent life lost. Another police life lost. Our protectors. And a long 24 hours on edge for a community. The person of guilt had to be put down. There was no choice. They tried. Thank you to our protectors. Pray for the family of the killer too. Because I am sure they are struggling too! But I am proud of my little town we put aside all our differences yesterday and today. We stopped to think of our own families. We all focused on what was really mattering. In Show Low AZ you won't find us arguing, or crying over the president. You will find us lifting one another up. Like Americans. I am proud of our community. I am proud of our police officers. Thank you for all that you do! Please keep this family in your prayers during the next while. Hug your kids, your husbands, wifes, parents, Ect. Hug them extra hard! Sending my condolences and Love, -Chelle
 (I've posted before and I will post again. Say Love. Be kind to one another. Don't hold hate in your heart. If we worked as hard at loving and being kind to one another the world would be a different story. Be the light in this world You want to be. And I am not just talking to you guys I am also talking to myself!) -Chelle 

Sunday, November 6, 2016

Oh So Blessed. Oh So!

I am SO blessed. I have been having some seriously fun amazing times! (This is my post shooting "look"... (I had so much fun with my Brother and Sister shooting today after church.) another moment of gratitude hits my full heart!
I know God holds all credit of these amazing milestones. I have been for a full two weeks living life AGAIN! Today in church during sacrament it hit me... Just two months ago I was on DAILY Iv fluids, because I could not tolerate jejunal feeds through my feeding tube. I worked my way back to all fluids and formula through my J tube. I keep pushing (as always... I have spent many many hours heaving my guts out because I was stubborn and ate with Gastroparesis. In a state where I literally couldn't have a sip of water.) I now went 2 whole days! TWO DAYS!! Eating by mouth!! (Minus fluids) wow! I am working on finding how I can have a well rounded diet with GP and its flare ups! I am working out daily. (A proven POTS improver... But my body simply couldn't.) I lost my nutrition. I was stuck in bed. Mostly because doctors did not know what was wrong... Neuros won't talk about remission to me. But my soul could not and would not stop. I couldn't give in... Even when I had no choice. But my neuro was SO pleased and jumping up and down with me just three short months ago. I am excited to see him in two weeks. And TODAY I was sitting in Church with a full heart of grate of all the things I have completed in a short time! True milestones. I am excited to keep trying. I am excited for the opportunity to LIVE My life. God stripped me down to nothing. He gave me a pile of No. But I am upon my mountain top... Humbled. Happy. Wiser. And Oh so blessed! I am still Michelle. However... A BETTER ME! One thing is certain God is telling me to go for it! I believe I have new callings & new directions in my life ahead of me. I am not cured. I have Dysautonomia. Bad days will surely come. Dysautonomia is still a mystery to the world. But we are managing better and learning what triggers me as a whole. I am having time to gain strength. Neuro bellies can reverse. But life is clicking for me  again. Keep going. Keep fighting your fights... Your battles... Your trials! Because Heavenly Father is there. He is molding You into a You that You did not know could exist. Pray, listen to that still small voice, and let him take care of the rest. He loves you more than anything!! Now I'm going to go spread my wings and fly! Never give up Lovies. I love all of You. -Chelle 

Thursday, October 27, 2016

Another Update. Another.

I have been pondering my thoughts this week. I have realized that most my Doctor posts are frusterating scenarios... How about we take a minute and A. Thank all MY Doctors! I have a very hand picked few that make up my team. (And let me tell you, they are so awesome) all of them go the extra mile for me. They all have compassion and work  their butts off to keep me going. So thank you to all my doctor (insert big hearts)! I have learned a few things the past week or so... Zofran has been causing my massive migraines (what?!) I am thinking eliminating that out of my daily routine is good to offer some serious help! I also found (Tubies) that phenegran comes in a lotion! Yes, how awesome! I am working on getting my phenegran in that form. If your formula makes you sick (because we know Gastroparesis weens and wanes) water it down. Or if you drink pediasure, Orgain... or any of those drinks and are struggling to tolerate you can water them down. Who would have known? I was doing really good with eating by mouth. Well for whatever reason this week that came to a screeching hault... I also lost my appetite. Something I actually don't struggle with (you know I am actually one who struggles with feeling starving) I have learned to force feed as much as possible. And when that just doesn't cut it... Eating sugary something tends to make my body want to eat more (when it decides that food is not a necessity in life)   I also have upped my yoga practice. Especially before bed. I don't do workout yoga I do relaxation, destressing yoga. It works! I think it's important to tell the body to calm down with Dysautonomia when the body is constantly revved. Get that heart rate calmer, the head clearer. I seriously am starting to swear by relaxation techniques. (Not a cure but it makes a difference) I also have done cardio all week and I'm yeah after being sick for two weeks I did not loose it all (like normal) I have been able to crank out a mile a day of good cardio πŸ’ͺ. If you don't know already. In Dysautonomia/ POTS cardio and leg/core strengthening is as important as sodium to restore. Plus who doesn't want to be simply stronger? I should not have any procedures for 6 months if all goes as planned and my feeding tube behaves! (I believe if my tube behaves and I stay out of the operating room my body will have a fighting chance.) that's why I fell so hard this summer...I lost a tube and my nutrition did not bounce back... Then I have a virus. Then I had Endo surgery. Now I've had my tube replaced and we are crossing our fingers... lets do this folks! Seriously. Moving forward with life Dysautonomia can take a back seat! I am taking charge. (I have some big plans in the works and in my head) "maybe I'm just a little girl, a little girl with great big plans" -Who sings that??! One Big Leap of Faith... -Chelle 

Monday, October 24, 2016

A Positive Note

So with Dysautonomia Awareness along with any awareness comes negativity. Because being sick is not a walk in the park. There is the ugly side of chronic. But there also holds a really positve side through this journey! Like, I have been shown so many amazing things in this life. I have received many blessings and I will never take life for granted again! I have the opportunity to be a better me... I literally am getting the chance to take all my shattered pieces and I get to put them all back together again into a bigger, better, braver, stronger me. The me I did not even know existed. I couldn't have found this me without Dysautonomia. Did my life go as planned? No, but whose does? Heartache and disaster will strike at times. In those times we get to grow. We get to truly test our endurance. Just when I think I have none left, I suprise myself. Without God in this life I don't know where or what I would be and I can honestly thank Dysautonomia for the biggest, greatest blessing in my life. My testimony. My faith has exsoared what I'd ever thought possible. So, the next time you break and you can't fix it. It's going to hurt but in that time you are becoming a part of something bigger than you can see in yourself. You will be able to find comforts from Heaven. Trust Heavenly Father. He can see the whole picture. Especially when we can't. Dysautonomia was not in My plans but it was all along. I will never take a simple bite of food for granted. A drink of water, sodium, energy to complete a day, the ability to stand up, or any other simple bodily function again. Though, workouts are tough, treatments are frusterating, & Doctors don't always know. I am here. I am being molded into the Michelle I was always meant to be. I have missed a few steps along the way but for every no held a greater yes. Isn't it funny how we see Gods work in our life's when we look back? I am SO tired right now but what I accomplished today won't go unrecognized. I'm brushing myself off. I have been pushed down. Pushed to every limit. I have broke. But because of that... I get to stand up again. Even better and brighter and with so much more fullness and love in my heart for God's plan. The real importances in life. Stand upon your mountain top when you get to the top and look at what You accomplished! Be proud! Don't let your mindset be full of  the worlds opinions of what you "should be", unimportant items, or what you don't have. Earthly things don't matter. The kind of car you drive, the house you live in, or the clothes on your back do not make you who you are! Count those blessings. No matter how seemingly small. Hug your family tight. How many simple moments of memories do you have? Do you remember the lavish times or does your heart smile when you remember reading the little piggies book with grandma, baking cookies in the kitchen, eating lucky charms at the counter with Grandad, being held up to the buffalo by Grandpa, going to the moon with cousins on the tramp,  taking all the couch cushions off and stacking them up to jump on them, turning your bedroom window into a "drive through" when Mom told you not to, making pretend IDs and money to play house, going to Eds for candy, playing with homemade play-dough, Ect. the giggles, goofiness. Getting beat up by the "Olders" like when you got hit in the head with a rock or tripped on the red scooter so your bloody nose matched.  Leave your imprints on this world. The simple ones, the beauty of your heart... Those are the things people will be remember. Those are the best times. See the tears, feel the pain but you decided what it does to you. Let yourself become who God wants you to become. Don't let the destruction of this world break you. You are too beautiful not to soar. Let your heart and soul shine. Remember who you are! Love always, -Chelle (this song  is my anthem. Let your heartbreaks in life be beautiful heartbreaks,  http://youtu.be/xyX-I-um5Kk)

Wednesday, October 19, 2016

Wrecker has Surgery 10/19/16

Me and Mr. Wrecker yesterday... He absolutely hates the nebulizer! I mean it really freaks him out! But I grabbed him up and snapped a priceless photo! (Look at that face, he was not having it) he ran like point one second after this was snapped.
This Dog means the world to me, he is always my little caregiving big hearted friend! Today we reverse...
Best Dog ever had sugery today (insert big frowns) We probably should have rescheduled but My Mom was off work and it was already appointed and we decided if we were going to have a hard week... We may as well get this over with too. (It needed to be done) So Wrecker had almost all his teethies pulled and is recovering. (Poor thing had an abcessed tooth a few weeks ago and lots of bone loss to most his teeth... Luckily we were able to keep the canines) So we are resting and I am gonna be his support this time! I have the best pup ever, his heart is the biggest! Let's both heal now buddy! And put this week behind us. Love you little Pup, sorry your teeth are gone (don't grow up yet, oh how I don't likenhownhe is middle aged! Does the world not know how he is like still a puppy in my mind?) Thanks to all who have reached out to me this rough past week! I truly appreciate all the prayers and support! (Think I'm having a better day today) .....I know I have some really good prayer senders out there... please keep a sweet friend of mine in your prayers. I know the power of prayer is great. God knows more then we do but he also helps us along the way! And I know he hears each and everyone of us all!  It's truly a battle to get care in our situations. Unfortunelty, no matter how serious. They are appreciated truly! XO- Chelle 

Tuesday, October 18, 2016

10/17/17 mystery weekend sickness found!

After spending two nights in the ER
Apparently with Spider-Man. 
Guys do you want some good news!?  I know I do!! I think we finally figured what's going on with this past weekend post surgery lung sickness! I have bronchial spasming... (Which is hilarious and annoying because every medical professional this whole weekend have been told from Me, "I feel like I am having bronchial spams." ) just Listen to me folks! I really do know what my body is doing 😎 I am that cool. Don't doubt! Lol 
But to be honest it was a very hard weekend for me and my body was sick and I didn't have help despite my best tries. (Well and it was weekend so you know doctors have life's too) so that stretched it out further. I just felt horrible and it was like no one could hear me medically. It was like beating my head into a wall. And I knew something was wrong. I was getting worse by the day...I was in the ER last night again! (I really broke my running streak of not going to the ER) but we went in because on Tylenol my fevers didn't break, all weekend long... My fever last night hit 101 on Tylenol.
I was like shoot! (I did not want to go) but with having a port a cath and medical issues you have to be smart and safe (even when you don't want to!) and of course low potassium (low potassium is turning into the story of my lab work results lately...) i 
am literally now being a good girl and running an extra special potassium dose through my Jtube with a dash of formula so it looks well weird pumpkin orange. I am being a festive Tubie lol today (Tuesday) 
as I type. Gotta keep that potassium up ☝️.... Can I take a minute to say what an Truly Amazing woman my mother is! 
She is seriously the best Mom in the world!! She never leaves me alone through tough medical journeys. She never has ever doubted me when doctors did and she easily could. She still pushes me forward on my worst days. She sits and listens to to me on my weepy days. She isn't afraid to tell me to fight this beastly condition because I am worth it. She shows me how to pick up the pieces along the way. She reminds me when I forget that I can do this. She is there for my grouchy throw a fit about being sick/Tubie chaos days. She is there for all the good positive moments that no one else truly can know how something so simple in our life can make my day. (Like eating half a turkey sandwich) She is there when the odds aren't with us. She is the one who is always no matter what by my side.  
Even when she works full time and has work the next day she is there in the ED with me all night long! Mom, you are one INCREDIBLE person I'm so grateful and lucky that God made you My Mom! On of the truly most beautiful hearted πŸ’πŸ˜˜Thank you Mom for all the million and ten things you do for me! I love you to the moon and back to infinity and beyondπŸ’•. You are my rock in this messy life and you keep me going. Thank you doesn't cover all my Mom does! It never could begin to...there are simply not enough words for how many thank you's my heart holds for you! Mom you are my biggest blessing in this life xoxo πŸ’•                                             So I have 
bronchial spams diagnosed by PCP this morning and that means basically my lungs have been spasming. It is from the surgery I had last Thursday to get my GJ tube replaced. It just happens after surgery sometimes. I will take my breathing treatments and pray it goes away! (I think a week of treatments. But these treatments can very well mess with my POTS) My pcp also thinks fever is my body's reaction to the lung spasms... everything just is angry that I am sick. This body needs to recover and chill. But feeling so relived! Because it is truly worrysome when you are sick and you know it, but your body doesn show it! Ay yi yi! (Actually my body did show bronchial spasming the ER visits missed it my lungs wheeze through the stethoscope) okay let's try and get better now. Capiche?. Lots of Love, Chelle 

Monday, October 17, 2016

Update 10-17-16

Well... SUPRISE! I had a tube change and now I am sick. I haven't been up to posting anything. I went down to Phx for an ultrasound last Wednesday... (All results were well. Celebrate that victory!) Then the following day I had a tube Change. I woke up with a cough (which can be normal and thought,  "Okay true"... But I remember thinking to myself, "but I have never woken up like this before." (And I've gone through many. My feeds are in half. But climbing back up slowly. Replacing the tube helped for sure because I'm not tasting meds and formula! (Idk if GI really checked placement since it was being pulled anyways...) he was busy... So idk (I don't like when I get told that by medical professionals. I was just going through the motions... Idk why the need to tell me that. I was waiting patiently. I had no complaints... I have a life too. I have an appointment.  I am paying for a service.) then by the time they wheeled me down stairs I started my famous Dry Heaving. So fifteen minutes later we got to call them and of course they only gave me half a dose of anti nausea! Those ones know better than to give me a half dose. Please folks! So that calmed things down. And about 30minutes post leaving the hospy I went to take Bentyl and my tube was upside down. (Now I have a low profile tube. That's where the problem Lies... You can not have it upside down because the tubing on the out side has a twisting locking mechanism. So they twists into place and lock. Well due to the
Upside down-ness the tube would not stay connected. Which is not only going to feed everything I own formula ... it would lead to putting me in danger if I were to be asleep and small intestine bile were to start coming out of my J tube. Those are vital!) so we called and I got to go back And my GI took his hand and twisted the stupid thing the right way and it hurt pretty good (it also repeatedly returned to upside down and I'm still making it not be upside down)  so I'm positive it was actually put in upside down... And I have always been preached to never ever twist a j tube! You mess it up inside! Well idk why this time that was okay to do.? We will see. They said it needed to be broken in like a shoe from being in the box...but we moved on with life and the next morning I woke up sicker than a dog. I had a big pots flare amd this stupid coughing and pain in my ribs (lung) and despite my best efforts all day I ended up in the ED all night long. And I didn't get good care. I am still sick with my lungs. Idk what is wrong PCP was too busy today to see me so i can go to the ER or I have appointment tomorrow... Yeah... This is what happens... Oh and a lot have asked  why I had the tube changed. And I haven't ever addressed that! You have to have them changed out every so often because they will get worn out and break. Plus for two weeks prior I wasn't  even managing a can of formula a day so something was off with the old tube... But yes they have to get changed. It was not for fun (wink wink) that's my update  lots of love and well wishes for all! My fever just got higher.  Tylenol won't break it... 4 days of this fever that will not break. I could use some prayers today for sure... This situation is breaking me. I can't manage to have medical care. I don't know what I am truly suppose to do any differently... It is really hard on me... It's a rough reality.... I have to call the shots without the medical knowledge. Doctors are putting it all in my lap. It's not my place to make these choices.... That's why I have them. But I can't find any of them the past 4 days -Chelle  

Tuesday, October 11, 2016

Tube change coming soon 10/11/16

Though this week is nerves for me... I choose faith in God's plan for me. He in fact knows the whole picture when I do not. I may have a broken body. I have to seek treatments. I may need tubes. I have to have procedures. But no matter what he is there for me. He knows. So yes, nervous is me but I think it's normal and I may be nervous but I will walk in faith, with the Saviour by My side this week. 
Okay, I am having surgery for my feeding tube to be exchanged (this guy above is moving out... Look at that hot mess! Seriously this tube has been a royal pain constantly.) for a new one (low profile) on Thursday.
(This is a low profile GJ tube. The tubes them selfs on the outside actually come off when not in use.) I am excited for two reasons... 1. My new tube is a low profile button tube. I won't have to see it or tuck away a long tube that shows icky bile. Oh and a clamp! A clamp!! 2. I think the tube I have now is malplaced at the moment as I struggle with intense nausea with feedings. That sickness stops when I pause feeds. I also taste medications I flush into my j a sure sign it's backing up into my stomach somehow instead of staying in the jejunum. (Small intestine I feed into) ... Well hey there are 3 reasons! I also have a nice slab of painful scar tissue. Only with this tube have I ever had any scar tissue. (So the doctor could laser that away if it needs to be.) ... The kicker is I am nervous because since my last surgery the end of July (afterwards)  my ability to eat by mouth changed a lot. In a good way. No rhyme or reason... (Now that was a much bigger surgery and I was out for hours verses 15ish minutes.) That's neuro for you! It does not make sense but hey!! we will take it! So I have been eating a little and just enjoying my time as the doctors have told me to do.... it can change at any time. They told me to just enjoy it now... So in the next 48 hours though my diets strict I am pretty sure I will eat all I can tolerate. (just in case)I wake up to no bites or sips Gastroparesis ville. (We don't know that will happen but well I woke up from my last surgery with better GI functions.) But I am being positive and praying that it continues to do "better" and that I will feel better after (hopefully) fixing my j tube . That will allow me to better feed formula and not go around without good nutrition. (I actually hope my tube is malplaced because otherwise we have a hurdle to jump and figure out what's making me so sick.) My nutrition has been bad for a good two weeks. I can't eat veggies and I can't eat fruit and I can't eat meat. Literally. They are too hard to digest... So though I try... I really can't... In the first place eat enough by mouth to stay alive and the nutrients aren't even well rounded at all (though I try to round my best nutrients out)... Another thing bugging me is the worst... Not the last time but the time before (so 2 tube changes ago) my anesthetist (who I know now I am only to have a doctor of anesthesia over me with my POTS) but he was a fruit cake and I never cared for him. He had the attention span of the dog off of the movie Up ..."squirrel"... (Literally in pre op he walked away as I was talking to him. Me and my Mom were lookin at each other and though we both were concerned we whispered, "squirrel") He took me to the lab and put me out before my doctor came in the room... And while putting me out he started hitting my arm and yelling at me that something was wrong. My arm was splotchy and red (probably POTS blood weirdness as My arm was fine later) he told me as he was hitting my arm,"to not fall asleep. He needed to know if I was okay." (That was frightening and apparently traumatic) because uh he pushed anesthesia through me and I fell asleep. (Despite my scared to death efforts) I learned a very valuable  lesson that day. I will never ever go forward with a procedure if I feel uncomfortable in my care ever again. Then I found out later he gave me an anesthesia  that should never be used on me with my condition. (So that has me nervous as all could be.)  I woke up to my doctor yelling at that anesthesia nurse... It's what woke me up actually. Then my doctor kicked him off his services... But no worries I won't ever let another do that to me again. I will wait for someone else to take me... I will speak out. So that's my update. Understandably. Nerves. -Chelle (P.S. My sweet friend is having a procedure on her heart today so please send those prayers to her today!! Thx) 

Sunday, October 9, 2016

Sunday

I have been re-listening to General Conference this morning. I know sometimes that some people that are not members of the LDS Chirch can become irritated or annoyed by our Wonderful Loving Missionaries. I think sometimes they think we are trying to tally up member count in our world wide church. As members we know how important missionary work is. I know what a blessing it is. What an opportunity it is in our world... But I love this quote by President Russel M. Nelson ... This is why we have Mormon Missionaries! It really is! (Mormon Missionaries A.K.A Elders of the Church of Jesus Christ of Latter Day Saints. Are members of the Church of Jesus Christ of Latter Day Saints who selflessly dedicate (typically) two years away from all their family and friends, in a whole different part of the world or country ... to serve a Church mission. Missionaries give every minute of that time to the church to do God's work. They put their lives on hold to do the Lord's errands. They do many selfless works and also give their whole time to help spread and teach the word of God and his Son Jesus Christ and our Church. They teach of the Book of Mormon And if desired with permission, they baptize new members.) Happy Sabbath, may you feel the Savior love for you, peace on your souls, and happiness in your hearts!-Chelle                                           President Russel M. Nelson's talk Quote: "That is why our missionaries leave their homes to preach His gospel. Their goal is not to increase the number of Church members. Rather, our missionaries teach and baptize10to bring joy to the people of the world!11"         https://www.lds.org/general-conference/2016/10/joy-and-spiritual-survival?lang=eng     
(If you want to listen to that talk by , here is the link.)

Wednesday, October 5, 2016

Faithfully God's Timings, hope for healing

Every time I see these autoimmune posts my heart gets so happy! (I did not always believe in autoimmunity as the possible cause... Until recently, when I sat down and listened to a doctor who had been studying This very thing... He made all my "questions" disappear because he had legit answers to them during the hour Lon presentation. It changed my thoughts that day. I felt strongly confident. Like why when I was on immune suppressants for two years did I not have improvements for POTS... (Well they explained there in that study.,
..it has to be a specific dose to work at all and they have other things in the works as well for autoimmunity, and I am seeing these links below weekly or more.)... Another thing I used to not love was that my rarely known disease did not have a lot of research... The past year holy cow have amazing people worked together to help us patients! Not just in our country but we have a world wide data base where our researchers work together from country to country. This gives me hope in today and hope in the rest of my days here on this earth!  This is why knowledge by doctors, and others is so important! If thy know they can better diagnose and know how to help... People can learn and get more funding for research... The more research the more they learn. The more they learn about a little known disease the better they can treat... The better they treat the better my life. This may sound weird but I have a really strong faith that I won't be cured but the next 5-10years they will in fact find better treatments to improve my quality of life with this condition! (An many others) Every time I've been praying about this disease and healing the past just few short months. That is the answer I receive. I also had a moment during conference that I truly felt this was reinforced into my heart... I will walk in strong faith of that and wait for "my day" to come! #hope #faith #beleive #GodCan when we can't provide -Chelle http://m.europace.oxfordjournals.org/content/early/2016/10/04/europace.euw154.full?ijkey=yNgpIRCkIFYHg6X&keytype=ref

Tuesday, October 4, 2016

I am NOT done fighting Dysautonomia

I am so tired and it's still morning... I am sick of having Dysautonomia. I am sick of having tubes. (That Dysautonomia gave me) I am sick of fighting with doctors and their staff.  I always end up having to fight and worry over the littlest things. They typically get turned into big things for reasons I truly can't understand. All I can assume is they don't understand... So they over complicate the simple, and get confused along the way. Fighting for care typically gets easier after a diagnosis. That is not the case for Dysautonomia patients. Because A. We (our condition) is not known about by doctors... We pay the price. We aren't know of... That makes our doctors typically afraid, confused, or they don't believe us. They also simply do not know what to do. Our "treatments" or I should say our best attempts of treatments... A.K.A a shot in the dark...We do have available are weird, to say the least. They make doctors look at us like we have lost our minds. (Sadly that's the first judgement and they typically stick to it.) I am so tired of fighting for care! Even something as simple as a little virus for me turns into mad chaos. (Physically  Viruses can tend to make Dysautonomia worsen temporarily or even permanently.) when I walk into a hospital with an infection or virus, I don't get the typical treatments like the others around me. Despite the regular illness making my Dysautonomia fly off the handle...(very high heart rates, low blood pressure, purple feet, (my blood pools into my limbs and doesn't go to my brain, pre syncope), low blood volume, throwing up (despite my feeding tubes because I now have Gastroparesis due to my Dysautonomia), dehydration, low potassium (despite my regular Iv fluids), migraines, crazy dilated eyes, spinal pain so severe, brain fog, and so much more... I get shoved out the door. (no matter what shape I am in... Flared up  POTS/Dysautonomia, and virus or bacterial filled.) Even in a typical POTS flare I am shoved out the doors... All they see is a big case or they see nothing but a crazy-stressed person. Because they themselves simply don't have all the puzzle pieces to understand it. (I do my best to explain but there is not enough time to explain in the detail needed.)  Dysautonomia must not be true. (They have never heard of it before we tell them.)  And only crazy people would go to those extreme (just weird) treatment options. (Like taking 10grams or more of sodium daily.) Those treatments don't make logical sense, without a good knowledge of what we know of Dysautonomia. (No, those weird  options you could call "treatments" are the only options we have. I mean I could not have dreamed up POTS on my best day... Let alone it's treatments! I mean no one with POTS could ever have imagined it. It's so complex the brain would have never imaginarily have thought of these symptoms. You would need a good medical degree that is for sure! The patients take a lot of time to learn how Dysautonomia intertwines physically in their own bodies!!) Today I am dealing with a stupid complication on yet another magical journey of something so simple being messed up by a medical professional due to my "must have it different situations"... I am just tired of fighting. All I feel like I do is fight for the regular things in terms of medical care. Things everyone else gets but I just can't because I have Dysautonomia. For some reason that makes what an average Joe would get turn impossible for me... You know I am complicated. I agree. But because it's not normal or simple... I typically always get brushed off to fight on my own. I do a lot of my medical care and I do it on my own. Unforunelty now, I have been pushed far too many times to do the task of my own medical care...and will be in the future pushed to become my own doctor again. No, I can't just change doctors. That's not an option. It is not that simple to even find a doctor who is knowledgeable on this condition. Dysautonomia is a lonely fight in the medical world for many. Dysautonomia matters! It matters a lot if your doctor knows. It matters a lot if the ER doctors, hospital doctors, and specialists know. (It effects about everything in the body we need lots of specialists with understanding.) It shouldn't take an average of 6 years (for me 7 1/2) to be diagnosed...(all while getting worse by the day.) Should I add a simple thirty-ish minutes tilt table test is how we diagnose POTS?! It's not even hard! (You put a patient on a tilt table, strap them down, put a blood pressure cuff on their arm, heart monitor, tilt them, and log the heart rate and blood pressures...) an average of 6 years for that? We shouldn't be deemed crazy before diagnosis. (As most are misdiagnosed with a form of an anxiety disorder and seek treatments before getting properly diagnosed with Dysautonomia.) We shouldn't continue on that rath for the rest of our lives! I shouldn't have to argue my case in front of the "grand court" of medical doctors in Emergency Departments, in my hospital bed, or in a doctor's office...on my worst sick days to deem if I get care or not! (Then if I do it's typically not the right care, they do not know, they won't call someone who does... My Dysautonomia specialist, they won't listen to me... They won't listen to my family with me... Even when they come to ask me what they should be doing...)  I shouldn't spend hours on the phone to get the simplest of things taken care of. I shouldn't have to push so hard for any medical attention! It is not my fault I know more about my Dysautonomia than majority of medical professionals! Can't you see? I just want help? That I have to. I have to know to survive. Because if you don't know what to do... Shouldn't someone? #Educate this is the life of #LivingWithDysautonomia it is a daily #battle for necessary #medicalcare. I don't want to have to be a my own doctor anymore. Dysautonomia severely impacts the quality of life in it's patients. 70million world wide have Dysautonomia why is it being ignored? -Chelle 
Want to help? Go to this link: http://www.dysautonomiainternational.org/page.php?ID=95 print out a packet at the bottom and take to your doctors. (Even your local Emergency Department doctors, and hospitals... Nurses and/or EMTS!) They can learn and get resources for education on Dysautonomia. They can help recognize the symptoms in a suffering patient with no answers. They can help a agonizing patient find a diagnosis. They can be aware. They can better treat. They can learn. They can join the fight and turn 6 years into 30minutes. They can tell their doctor friends. They can reduce sufferings. You giving them this information ... Can be the first step to changing many lives.  (I do fight for medical care at a rediculous rate. I do believe it is from lack of education. Dysautonomia patients are constantly going through this. This post is suppose to show the impacts of the lack of knowledge of Dysautonomia and how it effects Dysautonomia patients... But I would like to add I have a group of lovely, talented doctors! One who treats Dysautonomia (very well) and some who have learned of Dysautonomia just for me. I am thankful for my good doctors. But even with their good care, I constantly am finding myself in the battlefield against doctors when I need care.)

Thursday, September 29, 2016

Rain Induced Migraine

(This is me in the dark... Migraine style!) I was so proud of my body handling the rainy day like a pro! (Well actually I was pretty shocked.) I went to my appoiments today. I was doing great! But about the time I made it to the dentist my migraine decided to make itself known. It wasn't bad at first (those are almost the worst kinds they slowly get worse and sneak up on you.) because of the sneakiness, I know I always talk myself out of treatment. The reason I do that is I think, "Oh, it's not bad enough yet." As it's slowly creeping up on me. I tend to wait hours with these kinds of migraines. I typically reach for the Tylenol at first (I always think it's just a headache. My bad!) but truth be known I just have migraines too often and I get confused. The nausea I have regularly so it doesn't phase me as a sign. The spottiness in my vision (well when don't I have something odd going on?)  I also seem to have some form of migraine denile. I do not want migraines.... So anyways at 9:30 P.M. I broke down and used my migranale nasal spray.(it is a migraine medication that treats migraines on the spot.)  It's helping! I still have my symptoms... Hopefully the second dose in a few minutes knocks it out completely!! My feeding tube needs to hold on for two weeks and the it can totally take a hike! I'm done with it falling apart and feeding all my stuff! I also have a big hunch that its malplaced and back flowing into my tummy (I pushed meds and it burned my stomach... That's a clear sign it went into my stomach not the small intestine. Boo! Maybe that is why I keep struggling with formula feeds??) Oh the life of a POTSie. Jump the hurdles, keep up the fight,& hold high faith that hope and healing are in fact ahead! Along with better days to come. I'm not loosing my smile today because today I conquered #LivingChronic πŸ’ͺ and this migraine is not going to have power over my goodness in this day! lots of love Lovies -Chelle 

Tuesday, September 27, 2016

Presidential Actions? 9-27-16

I think I will write about the hot topic of this very fall day...I have something to say. I have never in my life seen so many thoughtless, childish  tactics (specifically on social media, coming from adults) over a presidential debate. It shocks me to see so many nasty posts over and over again. Now I realize we all have our own opinions. I'm not trying to change anyone's opinion. (This is my first and only post over the presidential race.) I simply am pointing out our actions. Why be nasty over social media? Why tear down one another? Does it really solve anything? Does is really change anyone else's opinions? Besides probably what they think of You... Or is it simply just sinking too low? What kind of world are we living in where our actions, even bad don't have any consequences? Have we lost all morale visibility as a country? Our country is diverse. We all are going to have differences of opinions. But since when does everyone HAVE to agree on everything? And if they don't agree, they are either offending someone or stupid? We are all entitled to our own opinions. You might remember the phrase, "common curtesy." One phrase I knew while growing up. It meant being kind to everyone. No matter what, holding respect for another wether we agreed or not. Now days that word keeps coming up in my life as a question, instead. Simply phrased as, "where is the common curtesy to one person to another these days?" In day to day life... I know our presidential election coming up is very important to our country for various reasons. But the second we loose respect for another individual and choose to make fun, ridicule, and attempt to tarnish. We in fact are not sending the message of Christ like love. What are our actions saying? Are they showing a trend we would want our kids, our future kids, or the youth now to see in us? Would Heavenly Father approve of these actions? Are we even thinking in the moment? Are we setting an example?  Or did we too fall into the vortexes of the evils of our world? Did we fall to where we don't recognize that right is still a right and wrong is still a wrong. Everyone can have their own opinions on things. That's perfectly fine. We can express our opinions openly. (And we should) But what is not fine is disrespecting others. Or choosing a wrong action while striving to make another agree with you. I think Sister Bonnie L. Oscarson said it right this weekend during General Women's Meeting. Quote, " Certainly Sisters we need to use sensitivity but let's also use our common sense, and our understanding of the plan of Salvation to be bold and straight forward when it comes to teaching our children and youth thee essential gospel principals they must have to navigate the world in which they live. If we don't teach our children and youth the true doctrine and teach it clearly, the world will teach them Satan's lies." I think we all need to take a moment to think of our actions. Especially during a political race. I think we all tend to forget that actions speak louder than words. Another thing I think we the adults are forgetting is that copying others simply because your friends are doing it too... Does not make it a righteous action. I think what our country needs the most is more love. Less hatred. Keeping of respect for not only ourselves but for others. (Even when we don't agree. It is okay to disagree, respectfully.) I think we can all post or voice our personal opinions with keeping love in our hearts. And the old phrase, "If you don't have something nice to say about someone don't say it at all."  Let's not forget who and what We are. Because I know each and everyone of us are too precious to loose who we are supposed to become. Just a thought for the day. Love always-Chelle                                                  The quote I was referring to above. This link is down below.. If you want to view it... https://www.lds.org/general-conference?cid=HP_SA_24-9-2016_dPFD_fLHNA_xLIDyL1-C_&lang=eng

Monday, September 26, 2016

9-26-16

Today is brought to you by no sleep and a dose of Tylenol... Literally! (I was looking at my last update and I realized I made it sound like I am on a lot of pain meds always. That's NOT the case. I only take it a few days a month. (On my cycles, tmi. Sorry but if I'm gonna update and raise awareness... I have to be real.) and it's temporarily. That's the purpose. But that is life with Endometriosis and mostly now PFTM. Since I just had excision of my Endometriosis two months ago. I take Tylenol or nothing for my chronic daily pain... If it's too much I contact my neurologist because we need to treat the root of my small fiber neuropathy, (that's a neuropathy of the small fibers in the tissues of the skin. It has a legit test that they diagnose off of. They take 3 skin tissue biopsies and send them to a special lab in Texas. It causes skin nerve pain, messes with sensory of the skin like touching something I probably "feel things" a bit muted or hyper depending. It makes you feel like your bones are hurting . Finally an answer to that! Body aches. My skin literally gets red, swells, and burns. About half POTSies have this and the others who get it have some form of a skin condition. Lone and behold! I have Livhen Planus and autoimmune skin disease. Where my immune system attacks my skin at the dermis.) Dysautonomia, or chronic migraines. That would be use of anti seizure, nerve pain, migraine meds... If my Gastroparesis flares up to a point of not tolerating my GI hospitalizes me. But for now we are recovering still from my last surgery (I am cleared but it's going to take a while to get back into therapy and get things lined back out. Surgery worsened my symptoms. But it needed to be done. It worsened my PFTM and that is typical. I have a disease growing inside of me literally and on muscular walls... So therefore the body reacts to that. Now we treat the rest of the pelvic chaos and in time my pain will be back in control.) My lack of sleep is caused by... My poor pup is having issues again! I am honestly baffled. But we are taking good care of him and he is doing quite a bit better today. It's his eye again. (Well under his little eye gets swollen. He also had a little blister both times.) it's healing. He is super moody from it. I do not blame him. Bless his little pup heart. This eye issue has fully healed and has been gone for weeks and then like a switch is right back. He needs some healing vibes!!  Sleep is pretty crucial with Dysautonomia. It gives our nervous systems a chance to "reset" while sleeping!! I am also not tolerating my feeds today. Which is not helping my sleepless, worn out body. I did just get some juice in. My blood sugar must have been a bit low because I perked right up about 30 minutes later. (I used to struggle with fluids worse than solids... It's so strange how my body just flipped into letting me have some fluids by mouth. That is such a huge deal!! ) And I have some speciality foods by mouth. But my Gastroparesis is still very present. I do need formula and I have been struggling to get formula in. (Hoping my tube change next month will help that oddness.) You can tell. I've lost a tiny bit of weight. And I dip but I am trying!! Eating by mouth is fun and hard at times. I can not eat foods That I ate before tubes. So there are moments of getting used to new foods. Moments of trying to find nutrient enriched foods. Moments of craving crazy foods that previously I used to eat, like enchiladas? Um no! I would kill over for a week if I did that. Yet I have been craving those for two weeks now. Foods I haven't eaten in years!. And a lot of trial and error with food experiments going on right now. But I still have to take my nausea meds several times a day. And I made the mistake of eating an regular yogurt. I should have eaten a non fat yogurt. Well I definetly paid the price... See Gastroparesis, where fats and fibers technically are your enemy. They don't make us sick like an allergy. They slowly  digest. When your tummy is broke and can't process foods... If you put something in there that takes a lot of mushing (p.s. Tummy is paralyzed it's not gonna mush. However it will spasm like a maniac.) and slows things even more. You will in fact be in pain and vomit. It's the law of Gastroparesis. (Wink). I have blood work to be done today. Blood work seems to always come on an already difficult day. In POTS we have low blood volume. So taking blood out of this body is not the funest of tasks. I got a little extra sodium and water in me to help the process! But every two weeks because of POTS I go and get my electrolytes checked. I am on electrolyte replacements. So we have to keep an eye out for low potassium and Magnesium. We watch sodium, another electrolyte but it doesn't test low when low by blood. But since I replace such an abundace of sodium (24Grams) per day we want to keep an eye on it to make sure it is not too high. The first thing I did today was pray. I'm positive it's how I am functioning at all. Some days are entirely battles like today. A broken body is a broken body. I am simply thankful for my blessing in this life and the comfort of understanding the bigger picture of eternity. I might not understand it all in today's time but I truly believe all things happen for a reason. We are here to learn and grow. That's the task is to learn and grow while keeping hope for a better future. And to just keep trying. No matter how blind you feel to your future! Had to share my positives. No matter how little they may seem my little strides are big strides! 😊 -Chelle 

Wednesday, September 21, 2016

9-21-16

Well I survived another down and back trip to the pheonix and back, all in a day's work. I am so fully fatigued. Today was a long day of pain and travels. My doctor prescribed some pain meds for my pelvis and we will continue to wait on physical therapy. (Will start in November) Then we can start working on recovery. Until then it's keeping my pain at bay while my pain is out of control... There is not time frame for how long this. Journey will take its literally one day at a time. Now if I could just find a pharmacy who has my meds in liquid form. Being a Tubie is thoroughly complicated! Next month we will be replacing my GJ (feeding) Tubie to a button. Yay! I have some nice granulation (scar) tissue from my terrible tube I have in me now... The bumper is horrid and is not staying in place. But my buttons do not even need a bumper. I am really excited to get my button back! I am so tired but thought I'd give an update. We are simply practicing our patience and praying for the best healing-Chelle 

Friday, September 16, 2016

9/16/16

My Gastroparesis and POTS flared up! I did get some sleep last night. (Yay!) Heart rate is high and Tummy is so very angry at me! Whoops. Tummy is bloated. We are currently on a formula and all liquid diet. We are letting GI tract rest a bit. I feel lucky I can still sip my ginerale!! But on the bright side, my eyes are so much brighter today!! We will take any and all victories!! I had a rough night with my symptoms and in return am a bit dehydrated and hungry today. 
Hanging with my bestie -Chelle 

Thursday, September 15, 2016

POTS life Day

This is not my highest heart rate by any means today but.. I have been up in the 130s ... I am not going to continue to stand to show you. I am out of breath just standing for a few seconds. This means my heart rate is high enough it's a workout to just stand. Also that my lungs are struggling to keep up with my heart upon standing and that I better sit myself down! Now I am a pass out risk! Phew! Having POTS is hard work! (Literally) .....  Can You believe all this sodium??? (A months supply)... What a visual!
I am so very tachycardic today! My body is not too thrilled today... I'm upping sodium still. But I've been fighting with insomnia for the whole week. I didn't get any sleep last night. Even when I am sleeping I am not entering any good REM sleep. I go through these phases. It's a part of POTS. But my body really needs sleep. When we sleep our nervous system resets. So without sleep my nervous system is running wild. The lack of sleep is adding fuel to the fire of symptoms. It's causing the insomnia (the cause) then due to the cause it's creating the problem (POTS symptoms at a high, problem) so then the high POTS symptoms add to the insomnia. It's a viscous circle! I also am fighting my GI tract. It's being stubborn. All I want to do is sleep... Everytime I get up I feel sick. My heart rate gets really high and my hands and feet are purple. A sure sign my blood volume is not only low but my blood is being pooled to my limbs instead of being up to my heart and brain. I am sure I am having low blood pressure too but I don't feel like going and getting the blood pressure monitor. It won't change anything to confirm my low blood pressures. Lol migraines been coming on for about an hour now. This disease is truly a monster! So next month be prepared for Dysautonomia Awareness (October). Meanwhile for today I won't be standing-Chelle 

Monday, September 12, 2016

Update 9-12-16

Wrapped up and ready to go...
Today is an oddly emotional day... I am saying goodbye to me Iv pumps (fingers still crossed). I was really anxious about returning them... Until I realized they have no purpose without IVS to go through them. Lol I do not even have an Iv so, it makes no sense to keep them anymore. Even if I need them they can't help me without IVS. So as good as this is, it's a bit nerve wracking to loose IVS if you have Gastroparesis and POTS. I mean don't get me wrong home health can always send me IVS and a pump but it's still a funny feeling. On a brighter note I was on a lot more then 10grams of sodium per day while on IVS. And the goal is to get it through my J tube (sodium and all) I was on 24G of sodium per day. Now I'm on 10G. It's rough I'm so little so that does sound absurd. Honestly when I found out how much sodium I had been on, I panicked... I was like 24G??? That is so much more than 10G per day. Then I also paused and thought (wait? Why am I not having "side effects" of too much sodium) Well, it's because my autonomic malfunction is messing with my kidney functions. Basically our kidneys pull sodium back into the body so it can be used. (An essential electrolyte. We need sodium to live just a little knowledge) but my kidneys take my sodium and throw it away. My kidneys take my sodium and say, "we don't need this." And I pee it out. Instead my body should be using the sodium for many other functions. All POTS patients have this problem. It's why we need to replenish our sodium levels. However they have agreed that my kidneys really suck when it comes to this. They really like to throw away my important electrolytes and they in turn over produce urine... My kidneys can literally dehydrate me, wether I get enough fluids or not.) so anyways I need all that sodium along with a medication that helps the body essentially hold onto sodium...if I don't get enough sodium my blood volume will be low, (which will not help it circulate up to my brain) my blood pressure will be low, my heart will have to work harder and beat faster... And a lot more. So we have some room to work, but my GI tract has to be able to handle it too. My life is seriously a series of catch 22. (I think that is life when your automatic bodily functions break.) I feel like a zoo keeper because honestly that's my condition. That they don't even know much about... I have to try to control automatic functions in my body... That you have no control of... And the specialists get just as frusterated with us! It's purely frusterating! But the good news is I am safe with my sodium. Neuro even said he went over Lab work and I am fine, (we do labs to test hydration, which is sodium, potassium, magnesium levels.) So that made me feel better too! Even POTS patient who have full functioning GI tracts struggle to keep hydrated and to get so much stomach irritating sodium in... A lot of POTSies are in IV fluids due to this. (I think if our kidneys just would work, wow out disease would improve!) Up and down and all around #LifeWithPOTS ! But good news on the GI front I ate my first vegetable in years!
(Well minus the 5 baby steamed carrots that killed me over a few weeks ago)... Plan B. Purees veggies... (NVeggies, fruits, and meats are the hardest to digest. They also don't fit in the Gastroparesis low fat low fiber rule of thumb.) So we have to get creative! I also bought baby spoons... Weird I know! But if you are a quick eater... With GP you have to find ways to eat smaller bites to help aid in digestion (hence smaller bites). Since I am eating by moth lately... That's something I struggle with. So we try! That's all we can do! My feeding pump literally beeped all night (for no reason) it said I had no food left and uh, the bag was full? Seriously? So I faught with alarms all night long! So of course I got on the phone and said bring me another pump (this one was about to be thrown at the wall last night.)  That is basically my update just working on getting food in by mouth,keeping my j feeds up, getting my sodium lined out, trying to stay off IVS!  ...I have been sickly but we are thinking it could very well have to do with needing more sodium...because I have basically just been laying around. Which was not fair after having that long good spell! I will start physical therapy in November for my darn pelvis. I did have a good day Friday. I got ready for the day  and I went to the store (that's a good victory in my life) 
I stumbled upon these super cute flats...
And psh no I am not that tan... But some of us have to compress our legs... Thank you! Hey redheads! Don't you all wish our skin tone came in anything like pantyhose, or makeup! (Me too) (It's fall Y'all & I am weirdly into it this year) 🍁now I get to go see the vampires to take my blood to monitor all I just told up about! 😊 One day at a time-Chelle ... I didn't post yesterday, 9/11... I was not very old when the attacks happened... But I was watching some documentaries yesterday and I am always just so shocked at the amazing, brave people who were involved. I just wanted to say. Pause and be grateful for your loved ones. Pause and take a moment for the families and victims of 9/11. Keep them in your prayers too this week. https://m.youtube.com/watch?feature=share&v=gPHnadJ-0hE  Xo-Chelle 

Tuesday, September 6, 2016

Choices 9-6-16

Sometimes being sick is overwhelming. It brings up a LOT of mixed emotions. Like right now I have been down for two weeks. My body is just in a lot of pain and I keep getting migraines. My body is also very upset with the the weather changes, and the monsoons... My pain is not only chronic... it's getting out of control on a daily basis. Not typical to have daily out of control pain... Chronic yes. Out of control?
No...Which means another thing.... My brain is like "um? Hello? Don't you know you are not okay!?" And I am okay!  Yes I am in a lot of pain and stuck in bed or on the couch. I am so incredibly fatigued. But my body really thinks it's not okay (a normal body reaction... It's in pain, it's sick, so therefore it's going to signal to me that I am not okay.) and though I know I am okay...basically at this point all I can do is let my body do its thing. Basically I'm sitting here and letting my body fight itself. (It's like waiting out a toddler's temper tantrum... You can hear it. You know it's there. But you know it will be okay. So you sit there and let it pass) I'm just sitting here watching my body go through its own tempure tantrum...  It's upsetting to be this way. I've been stressed out that I have been down. But as I have been trying to do everything I can to "make it better"... I came to the conclusion that all I can do is simply the best I can do. I am taking my meds. And laying around the house. Do I want to be? No? It feels like a waste of so many things!! But it's truly the best I can do for my body and if it wants to throw a fit I have to choose to just let it. I have to just wait it out and hope for a better time. Let it pass... I can think of a million things I "should be doing" off the top of my head. I've been letting that eat at me all week. But is that really going to make my body stop and feel better? No. There is a lot of things I "should" be doing but I simply can't right now and that has to be good enough for today. Nothing makes me more mad and frustrated then, being chronically ill. But I don't have a choice! So, I can get upset and emotional or I can take a deep breath and let it go. You can only do the best you can! Beating yourself up for things you can't control because they aren't the way they "should" be. Will get you no where! -Chelle 

Monday, September 5, 2016

Updates

I was really excited when I woke up feeling well and with energy. (Not totally drained) I know I have been posting about my wonderful positivities lately (and they are amazing huge blessings!! I am eternally grateful) but I am still sick. I am really dealing with pelvic dysfunction and it's not easy... Especially post surgery. I won't be able to start physical therapy until November. It's backed up that far... And keep in mind I will have to travel once a week three hours away from home and back three hours... That's not easy on a POTSie body and I don't have a choice. But today my pain hit hard again. It's just like flash backs and panic... I know I will be okay, it's going to take time. My specialist said surgery would make it worse. She wasn't surprised at all. It's just I'm sick of getting worse to get better. I think a little panic sets in as I am remembering how much I did go through and how I have to re walk that path. (Hopefully I heal faster and netter now.) that's been rough. I've had chronic migraines. I have been POTSie for the last two weeks. And when the weather started shifting from summer to more fall like... My body decided to freak out over it...( I do this every year)... I am reaching feed goals. Which is exciting but it's a full fight daily. But I keep reminding myself I will get through and we can do hard things! But it's rough with the nausea. The the nausea meds seem to just add to the fatigue. So yes I have made improvements with my feeds and no IVS ... I am so so happy but I'm still sick and fighting for quality of life and to be able to get up out of bed. I hope when I am cleared to have more excercise that in itself will help my POTS. And when the weather finally makes the full change my body will calm too. I just have to keep having hope and faith that things won't be perfect but they can improve. Studies are being conducted and hopefully better treatments will come because Dysautonomia is truly awful. It takes perfectly high functioning people who are young and throws them into a whirlwind of sick, being stuck in bed, it's stealing and wrecking our life's...also if I don't have my hair and makeup done, I am not having a good day. Despite my smiles and positivity. I am physically not well...a lot get confused but I promise no makeup is equal to not a good day for me... I do believe God has a plan. I do believe we are rewarded for our hard times in the next life and in this life as we grow, learn, and gain eternal perspectives! Keep fighting just keep going!! Okay? I will be along side you xo-Chelle P.S. Wrecker was so much better and I was so relieved!! But then two nights ago he got his eye scratched and bleeding... Poor little guy we have him on antibiotics and some sort of spray! He is improving!! ( all we can assume is something stuck/ stung him in the eye, poor puppy... Because since he Yelped in the yard, outside that one night a few nights ago...he has been afraid of the yard since. We are working with him and he is loosing that fear. So taking care of my pup. I hate this so much!! But he is looking better and acting better today for sure) poor bestie πŸ’™ lots of puppy love for the Wrecker dog!! No he is not sick, just something with his eye. He eats, drinks, and barks and plays. The animals in this family the past little bit🚫more of these shenanigans!! All our animals in our immediate family have gotten sick (none related, it's truly strange) #dogupdates 

Thursday, September 1, 2016

9-1-16 Puppy Prayers

Working on getting my sodium lined out today. (Will be glad to have that situated) well, I hope it gets lined out today I am about out of my sodium... That's not going to go over well.... Pray I don't run out! I am still fighting feeds but getting there! But my poor pup is not feeling well! Oh Wrecker Dog πŸ˜• I don't know what is up with him... I can tell his face hurts because I can't pet that one side and he shakes if I do. I decided to monitor him and see. He has been eating and drinking. He is also alert. But he is so sleepy and just you can tell he hurts. I have him the right dose of baby aspirin. Poor little thing!! I am not liking my pup being in pain! (I honestly don't think he is sick I think something is hurting him.) we are both laying on the couch this rain has got me supine. 
puppy prayer for my best friend please-Chelle 

Wednesday, August 31, 2016

Celebrate 8-31-16

Today is one week no IVS... NO NEEDLE IN MY CHEST πŸ™ !!! 
"It's not about your scars, it's all about your heart"-Mindy Gledhill. Only using my feeding tube for both hydration and feeding!! Whoop whoop! Seriously though it's surreal and very convient! I don't know how to feel besides extremely grateful. I feel so blessed. I also feel nervous. I at some point obviously had a switch of some sort, neurologically. This led to better GI motility to allow my j feeds to become higher. I'm not sure I've ever really moved "forward" with Dysautonomia. It's really just been a battle of one foot forward ten backwards. This day also is the end of the month I became ill 9 years ago. In a year I will have conquered a full decade of living chronically ill. Due to my chronic illnesses life has definetly not gone MY way. MY plans did not get "made" things changed in the blink of an eye, yet slowly overtime. I thought I would always be better next year. Then I fell on my face so hard I could never fully get back up. I fought daily to survive life. But I tell you I am blessed!! I have a lot of knowledge about my life. I feel I know the true importances to seek. I know I have witnessed special blessings to myself on some of my worst horrid days! I have felt so sick I have had many days I thought death would be taking me. I have crumbled to the core. I have lost full control of my life such as work, socializing, living.  It soon became replaced with doctors, treatments, and struggling to get by day to day. I will always keep trying and hoping for better quality of life. I know because of mine afflictions, that I have become stronger. I have recieved so many blessings i would have never of been able to have been obtained on any other path. Being so Chronically ill, has changed everything in my life but I can honestly say... though times have been hard, lots of hard, it will always be replaced with something bigger and better! (Maybe not in this life, but the next.) and sometimes blessings the size of an elephant are with us in the moment but our afflictions are too much to bear. We are in the midst of fighting and clinging to our faith. We are wondering why God would let this happen to us? We are in pain. (I know I saw many blessing during the aftermath of a hard time) Well, he is molding you. He is changing your life forever. Even if a miracle happens you forever are changed. What? Maybe, you don't want to hear that... But maybe, just maybe it's one of life's greatest gifts. A view upon a mountain top is one of the most beautiful views. Go climb it! Find your perspective that fits your diversity in your life ! I've shared this song, beautiful Heartbreak by, Hilary Weeks....many of times, I've listened to it more times than you could count. This song has always resonated with me. Always spoke to my soul...this song was in my head during hospital stays, procedures, beating my head into the wall needing help and not receiving it, tests, doctors office visits, travels, what felt like wasted time... Sure. I've been crushed, mangled, pushed to all my limits!
But yet here I stand strong... Writing this post to encourage you all to fight the war. Maybe you lost the battle today. But the war is not over! "I never dreamed my heart could make it, I thought about turning around. But heaven has shown me miracles, I never would have seen from the ground. Now I take the rain with the sunshine because one thing that I know, he picks up the peices along each broken road. Every tear every doubt all the pain I went through was the price that I paid to see this few. And now that I'm here I would never change. the faith that I feel and the strength that I find through the bitter sweet tears and the sleepless nights. I used to pray he'd take it all away, oh until it became a beautiful heart break." -Hillary weeks (go check out her video on YouTube!! And her song!!) You never know what tomorrow brings. I used to laugh at the talk of getting better. The truth is the odds are I will never be better as a whole. I have a complex neurological condition they know very little about (and it's not new) I also have many chronic illnesses...(it's also the end of Gastroparesis Awarness month.
One of my worst conditions brought on by my neurological condition. I won this month but many have lost. Too many. My friends are passing away. We don't have good life qualities. We need help. We need more than 2 FDA medications to speed gastric emptying. We need to not have to buy medications from other countries. We need more than feeding tubes. We need more than nausea pills around the clock and still suffering. We need not live in massive pain. What we need is help in any form. I don't want to see someone die on a weekly basis or more. That IS the REALITY of Gastroparesis. Go look into it. Make yourself aware. It's a silent killer.) I also am completing my last day of a medically induced detox from a medically induced withdrawal last month. But the good news is I am off all of it now!! I wasn't going to share that tidbit but I think it happens more then we realize. It was part of treatment for a misdiagnose anxiety disorder and they left me on it and I did not realize I was on such a strong medication in the first place...you trust your doctors, especially when they are holding promises to 'fix' you...(this was a long time ago)... So while it was awful to go through for while... A total blessing in disguise. No more now.  But I moved a few steps forward this month and that's my victory. That's something to celebrate-Chelle 
(I hope LDS women go check them out!! They are amazing!! Link:https://www.facebook.com/LDSWomen/  do not mind me borrowing this picture to share, I just simply love it!! it's why I blog. If I have nothing to offer the world what's the point in having all this knowledge? Guess I better share it!. I must be a tool in the bigger picture. That is why I blog!) 

Monday, August 29, 2016

Okay, I Guess I Will Post 8-29-16

I guess I should write a post! Since I haven't been on here much... Basically I had surgical clearance! Whoo hoo! But I'm still healing (insert eye roll)... It's only been 4 weeks and my doctor is very right... I just wanna be healed already. ( I need to gain some post surgical  patience.) I am doing well considering everything, in fact real well (knock on wood) today I feel the best I've felt in the past few days! Holy horrid pain!! I will be hitting therapy again and in time this too, shall pass. (that's the good part) until next time...(but next time may very well be my last last dance with Endometriosis, I'm very done.)                            meanwhile I have been working on pushing those feeds up (my fluids are fine all night)  but my day feeds of a "meal" are brutal! I had a few days where they were totally fine... So I will keep fighting until the death of me! So listen small intestine you're gonna do your job and take in the formula. The way I want you to...( like last week) Do you hear me? Thanks!  I'm still attaining my goals of feeding just misery in the meantime. The good news... Once my meal is over I bounce back to fine! I am not aloud to work out. (I think my biggest post surgery frustration... Because working out will help my POTS!! I can luckily walk as much as I want, so I "walk it out, walk it out" "left side walk it out right side walk it out" anyone remember that song??? Haha! πŸ˜† I got vampires today so we will see how hydrated I am with my j tube... (No needle in my chest) ah! Yeah that's right! It's like a million pounds of relief!! I hope it sticks and lasts!! They all have warned me tomorrow it can go back but I think I am very determined! (I have no control over it but I like to tell myself I do! Honestly if it goes back I will choose to be happy for the time I had in the meantime.) I had to step into Walmart today! Oh boy! If you live where I live you know #thestruggleisreal! And today town was busy as a bee! So I parked Handy it got hot, "Sunny at 75" and wow if I could have a dime for all the glares I recieved I would have some money!! πŸ˜‰ I know I look healthy with my makeup on and my hair done... And I know I am young but folks don't judge a book by its cover! I felt like jello. Now I am super tired out! (I literally walked in found this cup that I had to have... (It is the little things in life, like an 88 cent cup.That brings is true happiness) Got my three yogurts and peaced out!) If there was room I'd write what was wrong with me on my forehead. But that's just that...there is not enough space. We do the best we can with what we are given. That's my ending. Keep doing the best you can with what you are given in this life.-Chelle 

Friday, August 26, 2016

My Day of Pain 8-26-16

Today has been a day of pain. I have had about two weeks of feeling good and bamb thank you pelvic pain! Courtesy of Endometriosis and Pelvic Floor Tension Myalgia. (I didn't miss you). At least despite the chronic pain that has landed me in bed all day... The crippling pain I woke up in. Has a light at the end of the tunnel! I removed my Endometriosis. So why am I in so much pain?? (I have pelvic floor tension myalgia) Now...Just gonna take some physical therapy and patience! Oh how I do not know how I lived like this for years??! I must have been a lot stronger being passed from Doctor to Doctor being told I was young, dramatic, or crazy. All to find out I was only getting worse due to time passing and not proper treatments. Proper treatments exist I am learning... (You just have to find them)  I found me some top notch pelvic pain specialists!! They specialize in pelvic pain and issues. Hence my treatment and help. (Life changing help) I was a trauma case. A TRAUMA CASE???! From being in too much pain too long. I will now always deal with being a trauma case. Did I get better and recover last time? Yes, it took about 3 long years. Do I believe it is my pain source now? Yes, I know it is looking back. Will I get better again? Yes. Why did this come back? My Endometriosis came back as it does. Causing pain which caused pelvic floor tension myalgia. Why am I in so much post surgical pain? Surgery agrivated my old trauma injury. That's normal. We aren't worried. My doctor and physical therapist has my back. Is it frusterating? Yes, but it reminds me of how much I went through. How much pain I can handle. Today my thoughts consist of one subject; "How I did this everyday for many years?!" Keep going you will get there! (If anyone has chronic pelvic pain without help or answers and want help I like to share my help... I have been going here for years and still go to: https://www.dignityhealth.org/stjosephs/services/womens-health/pelvic-pain-and-gynecologic-surgery ) I am picky when it comes to doctors.... These doctors helped me. They are specialists of a specialty. The only thing they do is Pelvic pain! (And obviously the conditions that come with that)  And they have so much to offer with compassion!! Your pain and care matters. Something I was not finding anywhere else. If you suffer from Endometriosis, living in pain is not necessary. I highly suggest them on any day! Be willing to fight for yourself!-Chelle