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

Monday, August 22, 2016

How Do We Handle our Afflictions On the Sabbath?

Read the article in the link below first, otherwise this whole post will make absolutely no sense! http://www.theunconventionalreliefsociety.com/2014/12/when-going-to-church-hurts.html?m=1        
                                                                I think there is a lot of truth in this. ( I can honestly say I have never had an issue with another member luckily! So no I can't relate to that part. I attended a lovely ward. Seriously!)  I don't think majority of any member would ever intend to hurt another... Sometimes they simply don't know what you or someone is going through. (We as people don't always air our dirty laundry)... Sometimes there are rude people. (I also know that no body is perfect and we are all human. We will make mistakes... We all always have room to grow... Which also leads to forgiveness)  I've learned that's life... Sometimes you must agree to disagree. (With keeping respect and Christ like love)! Sometimes our own sorrow in our own life can take over... I honestly think that's when that strong I don't want to go feeling kicks in. Does Satan want us at church? (Or would be prefer us to be more distant  and unplugged for the week? )...It's free agency. I don't regularly attend church... (Mostly my health, but for a while it's been both Health issues and that it's so early for me and my chronic symptoms) I always plan to return yet time passes. I'm not angry at God for my trials... I am thankful for my Savior Jesus Christ! (And there have been many times the Holy Ghost has given me personal Peace through my chronic journey...) Mostly, I can thank the church for my positivity, my spunky never give up attitude, the trudge forward, and if you fall get back up... Brush yourself off, then try again! We all fall down but if we get up with the Savior on our side our chances will be so much higher and our endurance and patience will last much longer!! Eternal prospective is extremely important too!! It's hard for me to go to church. Not that I don't want to... Because I am disabled. Idk if that's an excuse or if he totally understands, as the lord knows all of our hearts❤️ He knows each and every one of us and our afflictions. I used to be so ashamed and embarrassed that church became something I could not do anymore. I was honestly confused at God. Why would he do this to me? I mean, I made the decision all on my own to attend church meetings weekly. No parent forced. It was 100% my decision. And I loved it! I am hoping soon that not being able to attend will change. My body will be able to push through sacrament. That I can partake in the sacrament again weekly...(If you can not attend church right now due to being so chronically ill... I ask you to pray to your loving Heavenly Father.) That's when I received my peace. He let me know he did in fact understand. (Not that it's what he want us to do ... is to not attend... He want us all to attend. But there was understanding.) I can tell you when I rarely attended and if I attend more regularly in the future. I will never take it for granted again! I will be grateful! It will be a marvelous opportunity to me! My trials here have allowed me to extremely enjoy General Conferences! I get so excited now! (I have always enjoyed it but yes it's church at home and I LOVE it) Though, church has moments of boring and pain in our hearts... (Maybe sometimes that pain needs to be felt to learn and grow spiritually.) The messages and spiritual fuel we get during those meetings help us not just through the week. But throughout our whole life's...  I know my pain at Church has been felt but during those meetings, just maybe you will get a new prospective to look at your trials? It could help that pain in the long run... Bring comforts. That being said every Sunday (I try doing scripture reading or listening. I listen to my hymns. I pray. I watch old General conferences on YouTube. I watch Mormon messages.) Though it's not the same as going to sacrament meeting....(I know He appreciates my efforts) He never said it would be easy. He only said it would be worth it! How do you try keeping Sunday's Holy without attending church meetings from
Being sick or whatever keeps you from being able to attend? How do you go and conquer church meetings while being sick? Or uncomfortable? What helps you? Comment below!! I really do want to know!! ( I used to sit in the back row, with my safe person Grandma Sherron by the door so I could Sneak out and catch a breath or help circulate my blood with having POTS. I also quit sitting in the middle of the isles... I'd always sit on the end so I could easily  leave if needed. Especially with nausea) And if I was physically really uncomfortable I'd pray! ( obviously I did in fact get sicker and stopped going, the odd part is it has always been temporary in my head. Maybe that's a sign?) I do want to know your tips and tricks let me know below in the comments!!!!!!xoxo-Chelle 

Saturday, August 20, 2016

8-20-16

I'd like to open with a quote that I found two years ago and posted to Facebook... (2 yrs. ago to this day) "Turn your can'ts into cans, and your dreams into plans." That quote is such a good reminder to keep reaching for those goals!!! No matter what don't give up on yourself! I completed my first night of only water and sodium... (No added formula) I added a lot less over time... My body was eating 24/7 though at a slow rate. So I would get really low blood sugars if I had to fast even... So I was nervous! But I did not get low blood sugar! I have taken morning meds and am hooked up to an hour long breakfast feed. It's going but so far uncomfortable... (supposed to feed 4 times a day, my goal BUT it can always be modified to what fits my needs) I am still on cloud 9!!! I will start the kidney medication fludocort when I get my Normal Saliene liter with Potassium (if I just quit my IVS now I would have pretty low potassium due to a size effect of this kidney Medication) I also have to build up on the kidney meds and ween down from 2liters of fluid to 1liter of fluid (with all the right stuff inside) it's gonna take a little bit of time... But hopefully not too long 😊 I can't describe how blessed I feel! It's unexplainable. I'm not cured I am just not in need hopefully of daily Iv hydration my GI tract will do the work! And I am having "meals" 4 times a day so my body will helpfully quit starving! (To my surprise if you eat late at night or all night the next evening your body will get starving feeling... I've dealt with this issue for years and recently learned in my, "living well with GP book" that it could be the culprit of my starvations! ( plus it's better to use the body if you are able to, as its meant to be used! ... But it's all because my feeds went up! I had to do continuous, it was NOT a CHOICE it was just what my body could handle/tolerate. But those feeds kept me alive and still should of info backwards... Something  has "switched" that's POTS... Thinks switch off and on problems come up and get better or some problems never get better ... It's unpredictable minute to minute...We roll with the punches! Luckily my punches are good as of today!! Day one of meals (all daytime) and no food in my sleep just fluids! (I am so tired today and I think i will be resting!
But still happy and spunky from yesterday! Definetly a Jammie day! I feel like my body needs some recovery today from the busy week!! Please pray for my Momma Bear she has I think the same virus I had last month!! Or something similar...she is sick!! Makes my heart sad! I am not used to being on the other side of these things! (It is tough.. There is nothing I can do to really fix it... Though I want to!! Now I know how she and my family feels) She has been so busy taking so much care of me with surgery and post surgery issues! Then she works full time and on her time off she takes care of me... She had  to drive me down and back to my neuro appointment yesterday. Next week she works and drives me some more down to the valley for surgical clearance appointments to start Physical therapy (PT). (Definetly ready to start having a lot of pelvic floor tension myalgia!) I am 23 and  Mom has never left me alone in the hospital for more then 30minutes... No matter how long or how random those hospy stays are... She knows I am a big girl but those doctors and nurses typically quit giving me care when she leaves. (Even for a few minutes, and I'm sick so she has to be bossy too... And tell them like yes she is complex but take care of her!)  It takes a team! (How amazing is my mom??) I think she is amazing and I love her to pieces! Truly a sacrificer, selfless, caring, most loving person I know!! πŸ’—
she is my rock and there could never be enough thank you's for all the thanks she deserves from me! Plus, all her help, patience, guidance, and endurance, faith through my medical journeys... it's not been easy on her either! But she teaches me what kindness and compassion truly is daily! Hard working, take care of all Momma! She is amazing and I lover her!πŸ’ feel better soon Mom, Love Michie) Xo!!! To all who are sick today wether it's a cold, a chronic illness, recovery I am cheering you on! You're in my heart and my prayers!! (You too caregivers, I don't think you guys always get the credit you all deserve, thanks and so much Love to all caregivers!) xoxo-Chelle 

Friday, August 19, 2016

Port Hope???8-19-16

Travel pictures: 
Me... Ready to conquer this day!! And my upcoming appointment like a boss! 
Travels...
More travels...
More...
More...
Haha isn't this so cute (sarcasm) don't worry I just wore them in the car! Taking care of POTS! #Compressions 
At 11:11A.M. We made a wish! (No I didn't wish for myself or treatments) 
Today has been long and a whirlwind but positively one of the best days of my life!

My j feeds are so high my neurologist agreed to take me off Iv fluids and use this j feeding tube!! All my kidney stuff from the rheumatologist yesterday was all GOOD things! (Those jerks made it seem like something was really wrong with my kidneys) but the low BUN and CREATIN are just good signs that I am well hydrated! You prefer them low! It means you're doing well! My high sodium is too a good sign of hydration (and a good sign for POTS as long and my blood pressure stays not high) we will continue with treatments of potassium and sodium and fluid via j tube and Iv for a few days or as long as it takes to ween my body down to 1 liter fluids per day (all while upping kidney medications to make those kidneys do their jobs better) my Neuro was highly pleased and I pretty much cried happy tears and was on cloud nine
(no more needle in my chest every day!!!) we will leave the port a cath in.  A...It's Dysautonomia and can change in the blink of an eye good or bad... I may need IVS in the future and B. I have so many ER visits, tests, gj tube changes, Ect. I need that port for all of those "sticks" plus as long as it's not accessed ... it is not an infection risk and no biggie to have! I can't describe the gratitude in my heart for my doctors that allow me to fight and follow my heart, instincts, and put up with me and my plans I always walk in the door with! He told me to, "keep up my amazing attitude that I am going about this the right way" enjoying the good times but realizing they can always go back or worse ... We never really know... But it's good We ALL ENJOYED the appointment (even my neuro was just so happy!)  we will stop the magnesium...
since its for migraines and will see what happens... Since they have improved! When or if they come back we will deal with that issue then (magnesium wasn't like some magic cure anyways it just simply helps them) I will continue my riboflavin, B12, and potassium for migraines and they seem to help my neuro situation anyways! I couldn't be happier and even if it changes tomorrow... I will always be grateful for the happiness I have felt these past few days! I have enjoyed my good days! I am so beyond blessed and I will NEVER quit fighting! Never give up on yourself! Even if the world does... "You are brighter than the stars believe me when I say, It's not about your scars it's all about your heart"(Mindy Gledhill) - Chelle (oh and of course when you go to #Costco) 
you must get more sublingual (dissolvable) B12 and
liquid* CoQ10 to push through your Tubie! (I basically just hang out in the vitamin/medication isle (I'm that cool) πŸ˜‰ OH! by the way... YES my nails are painted #GreenforGP #Gastroparesis #awarenesmonth #GOGREENFORGP #StarvingForACure (when I post about Gastroparesis awareness and hashtag #GoGreenForGP (Ect) it makes me feel like when I was in high school (Cheering) hahah our school colors where green & gold #GoCougars! πŸ˜‚πŸ‘πŸ…πŸ“’πŸ’š #relivingThose #HighSchoolGloryDays 

Thursday, August 18, 2016

What Rheumatology Lab Results? Sjrogren's? Yes or no???

My Iv boxes have never had a green sticker on it before that says, "Contains medications." Woah...(hope I got the right stuff because I do not have any medications in Iv form... Dun dun dun! ) lets open it up and see πŸ‘€ 
We good!
Just plain ole IVS with some electrolytes! Yum! And I got a "new" well my pumps are rented because they break or malfunction.  This pump could be ten years old for all I know! Anyways that's just how insurance companies do! Fingers crossed this pump is a good guy! I would like to send out a special thanks to my home health company for sending me a completely dead pump that now needs charging and is inturupting my very important window of feed rate opportunity! Let's charge! And wait! (With these pumps they won't work until they get so much battery charged, I am pretty sure if it gets to 1bar it freaks out literally beeps non stop even when you plug it I in...and you have a total of 4bars and it works even while plugged in... Unless it's down to 1bar... Then you just have to charge it up and wait) 
***RHEUMATOLOGY LAB RESULTS FINALLY CAME*** the lab results from rheum prospective said no inflammation in my blood (a few different tests for blood inflammation) I did have a positive ANA (most likely a false positive as I always go back and forth in the past) No Lupus, No autoantibodies (that I have previously had... I did at the same time have both SSA & SSB autoantibodies a few years back along with a positive ANA, despite a history of back and forth false or positive ANA tests. It's not often someone will test for BOTH SSA & SSB autoantibodies at the same exact time. So I was slapped with diagnosis of SjΓΆgren's Syndrome. which was not incorrect) but as time has gone on... Along with all sorts of medical issues that are complex... They kind of are going with: as of now unless something changes NO SJOGRENS SYNDROME DIAGNOSIS YAYY!!! (so I've been undiagnosed? But they also said its not a for sure. They can never be sure with these things and I can come back in a year to retest)! But I tell you if I get those crazy fevers with no explanations that landed me into hospitals for months again I am going back for testing!  HOWEVER my KIDNEYS where all kinds of crazy! (I did start kidney meds and am see a kidney specialist... So my BUN and CREATIN were low... Kidney function was normal however (good)! my sodium was HIGH what!? (I have POTS, so we get low sodium and are to replace so two things are probably happening A. The kidney medication is suppose makes my kidneys use sodium instead of waste. Which my kidneys do waste my sodium and not use it correctly (my POTS but it's super crazy even for a POTSie) or B. I am over correcting with sodium replacement!  (POTS) or I guess there is a C. It could be both things together! I see my POTS specialist tomorrow so we will for sure get this sodium lined out! He does do lab work for my hydration levels every other week so he keeps an eye on me. Since I am on Iv fluids along with Magnesium and Potassium via IV! (I also put in yet another call to another specialist ... because well my kidney doc needs to know what's going on!)  Especially since I am planning on hopefully quitting Iv fluids and  using  my j tube for fluids (which means upping my kidney meds to be able to do that and keep hydrated, & my blood volume up to normalish)... The plan for months (that has been delayed)  My neurologist  is over my Iv hydration orders. He wasn't getting the message correctly about changing hydration orders with the new addition to upping fludrocortizone...so he was like why does my patient (me) want two seperate bags of Iv fluids?? It's he same in one bag... Mass confusion. I needed it seperate to wean down...But he didn't get messages correctly! He was not a happy doctor when he found out! And he fixed it! Timing was bad it was right before surgery and you don't go messing with things during those times...So I see him tomorrow with high hopes to maybe makes some life changing changes to my care!? (Better for me and works we hope) knock on wood! Those changes would be to up the kidney meds to go from 2liters fluids per day to one liter fluid per day. And not in IV form then we'd put the potassium and 1 liter with sodium through the j tube as well... However we have no magnesium plan that can not be through the gi tract for sure! (We are in high hopes of loosing Iv fluids daily!!)  Today is my restful day. I have had one appointment everyday this week!! Tomorrow I have  a down and back trip to the valley! (Gotta see neuro) Rough day for me. I also need to prepare a bag now that I am thinking about the round trip.lol. Being a Tubie and chronically ill is like having a baby gotta have a big bag full ofsupplies and of course a few just in case things! (Like the kitchen sink, I am like Marry Poppins)  Wish me luck!! I need it #nomoreIVSplease (please pray too) Love-Chelle 

Wednesday, August 17, 2016

8-17-16

Today I had an early appointment, not my kind of appointments... I like time to get my symptoms under control the best I can...so of course makeup doesn't matter and I was like oh yeah my hat and the big news is I can now have a baby pony tail again!! How lovely is that???!! I looked like a billboard for America so I guess it's good that I'm American lol I also wore my Stars and stripes t shirt because I'm sorry but I spent money on it... It shall be worn more than once! Just saying! I looked like a hobo anyways so now I am just a brightly dressed hobo (wink)! But I am still having decent days knock on wood! Tomorrow is my only non appointment day! I fully intend to rest and prepare for my travels to see neuro and I should probably make a list (what a drag) My feeding pump is broken and won't stay shut without tape.
So this is what I rigged up Hahahah it's a folded in half medical mask...(to protect the screen and buttons)  And clear medical tape to keep it shut! (The little clicker part that holds the tubing that goes into the pump gas a click shut system the clicker part isn't staying clicked... If that is not clicked a.k.a shut my pump won't do a thing but beep)...(I am living up to my Woolford family expectations! Duck tape and WD40 fixes everything haha inside family joke!) no I didn't put ducktape on my feeding pump just clear medical tape! so also working on getting a pump exchange tomorrow! Just found out my coordinator is no longer working there any more (big frowns) I've been using her from the begging of Tubie feeds. My heart is actually sad. (I hate loosing good helpers) These home health pharmacy coordinators can be horrid or awsome and they are the ones you speak to for everything! Like if I need anything fixed or my orders I go through that same person for everything... but for real why wouldn't they shut off her answering machine or switch it to another extension???. They don't even have a replacement yet... I am getting another inifinity pump tomorrow (fingers crossed it works well.... The last thing I need when my feeds are so well is a bad pump to mess them up)... Are you guys sure it's not Monday??? Because it really is feeling like it is a Monday! Now if I could get my rheumatology lab results??? Maybe??
Every POTSie has a special stash of sodium with them... These are sodium chloride tablets but if I have a POTS attack I would need some of these and fluids... To replenish my electrolytes and help build my blood volume back up! I noticed they weren't in my purse...(I did not even think about it, which looking back not so smart) I did not need them I just was like hmm where did my sodium go? I never thought a thought of it again... Well I just found them in my feed backpack (which makes more since it's always with me too and it's where all my food is... And syringes and such)! Some days there is sooo much stuff too keep track of you find things you didn't even realize you lost haha! I want to end my post of today on a good note. So here is a big positive! My stoma is healing... It's not totally healed but a lot less bleeding and my chunk of scar tissue that was visual is going down quite a bit! So neosporin and a lot of TLC really did help (the outside) plus it's not so tender and hurting badly!! And as I was just thinking yay my stoma is healing... I was playing with my stud earrings I have been wearing. And I was like oh earnings are like stomas (so basically I am just so darn cool I have a pierced stomach (they should like bedazzle feeding tubes. Totally kidding!) but I now will never think of ratings the same again! (Funny how medical changes life's out looks?)  Hope you had a happy Wed-Nes-day (anyone else still have to do that to spell Wednesday?? Hmm??)
Xo!-Chelle 

Monday, August 15, 2016

8-15-16 Realizations

I am being beeped at while writing this post! (Beep beep beep beep) I just finished all my formula and all my fluids!! #whoop #happygirl #tubie  
https://youtu.be/sM27ewIDtnI I just shared this video I made last year on my FB page... (It popped up on my memories) I remember making it in literally an hour because I had found out an hour prior it was Gastroparesis month!   Ironically  it had been a year that month my Gastroparesis got so bad I couldn't eat by mouth! As I just shared it for more awareness, I decided to watch it. I thought to myself, "this video is probably going to be one of those moments when I look back and think to myself, 'what was I thinking posting this?'" To my surprise I ended up crying my eyes out. Not because I am sad, but because I have come so far. I mean really really far! I kinda was thinking last night about how I have been sick for 9 years this month. August is a hard month for me because it's a reminder that it's been another year. (Without a magic cure) don't worry I moved past that phase years ago. I have excepted my new life. That doesn't make it easy... But I have endured so many things and there have been many moments of feeling completely lost and out of control. What do you do when your whole entire life comes crashing down and you can't do anything to make it better nor can any doctor or person in this world??! (Turn to God and your loving Heavenly Father, and don't forget he isn't a genie)  Many days I have grieved my old life. The old me. This past week I have felt really good, the best in months. I am having a good streak!! I know at anytime it can change... I used to know that and wouldnhave a huge heartache every time I got back to being really chronic and malfunctioning.... I would grieve the old me all over again.. But through this journey of turmoil and pain... Choices and treatments... The hardest decisions in my life... The corners of having to do things I simply didn't want to... Becoming the person i NEVER wanted or THOUGHT I would be... Relying on others to help me do things I should be able to do myself!! Living at home at 23 (okay those two still irritate me to no end) but through all these battles and rough times I have grown so so much. I know things I would never have known if these bad times never happened to me. I found out to enjoy those good moments in life those good days and to spend them with the ones I love. Do things I love! Time is precious, so I now just enjoy it when I can and that is okay for me! I find joy in the littlest things. If I get up and have a tiny bowl of cereal or do some dishes or make my appointments with a little extra energy to do something else. (You might remember when make up was my hobbie and love... Then I was too tired and plain sick to care about how I looked. I would try on good days. But before I knew it I lost my make up love... Especially after my tremors worsened on my left eyelid. It won't hold still when I close it to put my makeup on.  My hands get shaky too...I couldn't do my winged liner that was cake to me anymore. I grew frusterated. To the point I dreaded makeup. My true love) but today I conquered my wind liner despite my disabilities! I just created calm and remembered I could do winged liner if I have been through all I have endured in my life... I mean really Michelle!)  I have a new rule of painting my nails weekly. (As it boosted my confidence, I have to be super clean and wash and use a lot offhand sanitizer with my Port! So it comes off quickly... But I had a realization this week... I wasn't painting my nails over a port? And them not looking perfect ? Despite them making me feel "pretty" uh no more of that!) I am truly really happy! When I take all my meds in my med calander the whole week! Honestly I praise myself when I shower!  I am one of those people who don't like driving and never had! I can't control it all and I get stressed and overwhelmed (funny in my life with all those uncontrollable situations... I still hate not having total control) but I have had to have rides lately and I am so thankful to those who have helped me out to take me to my appointments!!  I mean so truly aprecoative! THank you all xo!!!! I think after this month I won't "hate" driving ever again I miss Herbie so much & my freedoms!! But I have learned to be more flexible... I have learned most importantly how strong I truly am. That video brought back memories... And that's just one avenue of my many health battles. I may fall and often, but I ALWAYS get back up. I always keep going & I can honestly say I have NEVER ever stopped trying and giving it 110%. I am tough and stubborn sometimes... Sometimes it henders my care. But mostly it helps my care because though I have found a team of specialists who seem to be able to get me and my situation. And I trust! Who try working together the best they can, I am the one calling the shots! I do all the researching I can, to the point I usually am one step ahead of my doctors (and sometimes they probably want to choke me lol because then they need a plan B and C because i typically have plan A when I arrive figured out or i tried it) I am constantly doing everything in my power to help make things better, to learn how to do this life. Because this is the life I chose! God gave me this life, though I wonder if he as my father told me, "Maybe this is a little too much to take on for one little girl." I am sure my stubbornness said, "watch me" I am the one who fights, falls, brushes herself off and chooses to get back up! I used to think how weak I was. That I was indeed the worlds biggest looser. But then I started blogging, and I found myself sharing my faith of the LDS church. I found myself helping others get help, diagnosises, or just helping them not feel alone and talking with a person who "gets it" ... I was afraid to tell the world about being sick. I was afraid people would talk about me. I was really afraid no one would believe me and think I wanted down form of attention?  I'm sure it a little to do with age too but I am seeing how truly brave, and strong I am! NEVER give up on yourself or your situation! Even if it seems endless and no one can truly help you in this whole world! Just take a deep breath and put one foot in front of the other... One day at a time! (Or one second) Lots of love from me!! Please don't give up you  CAN do it!!!!! (you might not be able to see it now but one day you will look back and think, "Wow, I did All of that! How crazy!" Be proud of you! Remember who you really are- Chelle P.S. I asked for prayers for my sweet grandma Pearl and she is back "home"... Thank you so much for prayers! 😘 Today I had the opportunity to spend some time with my other Grandma Sherrron and I just love her to death!! I enjoyed my time with her on a good day!  She lives in town and I think I have a lot of her in me... She just gets me! And we went to get drinks at sonic (I have been fighting with my gastric tube since last night m, it was clogged. I was unsure why or how...) but I chose iced coffee yummy! And it was just very liquid not chunks of anything... I hooked to my drain bag and was a lot Leary knowing it was clogged up... Well I just looked down and all my little blood clots (that formed inside my tummy from the bleeding scar tissue from my stoma) were visually in my tube so it pushed them out of the tube! Thanks Grandma!! You saved a G tube πŸ˜‰ I love both my Grandmas and I am so happy to have had some time with both of them this week! Love them, they are precious gifts!! -Chelle 
Anesthesia makes my hair fall out a bit this is 1/3 of what I got after combing it today! Yikes! Anyone want to buy me a wig?? Lol I always do this... Everytime! (I won't literally loose all my hair) just a rediculous amount (in my humble opinion) I could have chosen this to ruin my day but you can choose to pick your battles too!  but hey hair always grows back! Never  forget that! (Well I know some people suffer from baldness and due to illnesses, you have my love) XO!!! 

Saturday, August 13, 2016

8-13-16

Prayers for my Grandma P. please!! Big prayers! ❤️ she is sickly today... I believe highly in the power of prayer... I woke up today pretty achy and just blah. However, was dressed and ready (makeup and all) and of course meds and Tubies!! All
Before 10 a.m. (That's a good thing guys!! I mean really miraculous, no drama intended.)
I'm currently chilling on the couch...reading my, Living  well with Gastroparesis book and I'm loving it! I mean it starts with this very quote: "Diseases can be our spiritual flat tires- disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way."-Bernie S. Siegel. (I have that same attitude! At first iwhen I fell sick it was some denile (I thought next year I will be better) then came the storm... It was like I had been hit by a hurricane and I though God was punishing me or that I messed up something in my life... I tried figuring this out for a while. Thankfully people close to me taught me that I was not being punished. God does not punish us. He allows us hard times to learn and grow! Prayers I learned were not a genie in a bottle but a practice of faith, a way for spiritual guidance, & to become closer to my Father in Heaven... During my tying times? Things really changed for me... it changed into something greater than myself. I chose to use my opportunity to better the world. Sometimes I am Leary on what I want to tell people. Leary about judgement. But I also realize the greater good that's in my heart. I believe God put this desire in my heart! That is when my blogging started. Now Vlogging a little. So, I am a 'tell all' type of person! I will tell anyone about any of my medical issues (embarrassing or not). Probably  too much at times but when I help a person find a diagnosis or better treatments it's 500 & 10 % worth it!! Or making someone who is ill not feel alone. All diseases are mean and we shouldn't compare. Being sick is sick no matter what! Now my prospective and love for this quote sides with me... not just being LDS and knowing that life is for trials and lessons for the next life, but I believe we can choose to be a greater good to the world by taking it all one day at a time and offering our love, help, & knowledge to the world! Sometimes all it takes is opening up to another person about your health battles to see and learn how many chronically ill folks are in this world battling daily! Kinda how a smile is contagious they come back to you... Sharing your stories & understandings with friends/others spreads to them. They then tell you theirs. Bonds are made and you feel better too because you've found out you aren't the only one battling too! We all have to work together in this crazy world. Keep learning, loving, & living the best you can! Have a good day lovies (if you feel brave share a comment with a health struggle or a struggling general in life. Did you learn things from it? Are you having a hard time? Do you have any advice to share or offer others? Did someone help you get a diagnosis or better help??) (We all will always have bad days living chronic and that's okay!!) just keep trying-Chelle ** Disclaimer!! I am not medical professional nor is anyone who comments advice always check with a doctor before doing anything medical like changes! Even vitamins!!***
now it's liquid vitamin time (CoQ10.
You can find it at Costco,  B2 (riboflavin) I found on Amazon but it's brand is Homeycomb they have a website, (magnesium Iv) *to help prevent migraines* it helps for sure, not a cure but it helps! Plus gives some energy for me anyways!! Then my L'il Critters Gummy Bites complete multivitamin. Found pretty much anywhere or a generic brand. But these too are from Costco! (if you have tummy issues they are easier to digest than a pill and the kids kinds aren't as much and easier to digest too. Like when I couldn't have ensure or any of those brands by mouth my nutritionist put me on peidasure (for kids) yes, less nutrition but it's better then none.) I also take sublingual B-12 (bought at most stores or pharmacies) or I'd use liquid but sublingual seems to be cheaper... But I lost them in my last trip and haven't found them since? Hmmm surgery and meds! Who knows where they are!!??? Better get myself some more! #GPtips&tricks more hugs and love-Chelle 

Friday, August 12, 2016

Love my sweet Grandma Pearl 8-12-16

I got my new book (Living well with Gastroparesis by Crystal Zaboeokski Salterlki CHC... And no this isn't sponsored or anything! I just share my stuff I do to help others) I studied it on my short travels to see my grandma who is in well not town but close by! and am excited to see if I can have new introduction to some foods.. After my studies!πŸ’š...
 MOST importantly, 
Today I had the opportunity to see my sweet grandma PearlπŸ’—I have missed her so so much!! She lives a good 12hours away. She hasn't been able to travel that long trip and I haven't been able to go see her due to my medical issues (make that long drive) and I always seem to fall on my face (medically) but we are working on that! I have been blessed in so many ways this week just by feeling well! I can't even describe how I feel... I am enjoying my good time. Sadly she is here to say goodbye to her Brother but luckily we know of the plan of salvation and keep eternal perspective in our lives. It doesn't make it easier for her to say goodbye I am sure but it helps. I loved my few minutes of talking with her and getting in my one on one grandma time.
She for sure has the biggest heart. I'm lucky to have such kind hearted blood in my gene pool!
I'm hoping to squeeze in some more time but we do have a lot of cousins πŸ˜‰πŸ˜˜ nine kids she had and now a lot of their kids have kids. We really add up 😊 I am thankful for her last minute visit! Speaking of big family my sweet Baby cousin is having another fundraiser here is the link to her fb page! Go follow her story she is a sparkle to the world. Her smile lights up a room! (@https://www.facebook.com/Brooklynnswarriors/) and of course find a shirt to help the huge medical expenses!! (3plus hospital stay and many years of recovery post that!) please if you can't contribute financially at least share and like the link on social media so more can see it πŸ‘πŸ»(@https://www.bonfirefunds.com/brooklynns-warriors ) lots of love! Go hug your grandmas if you can! Love you Grandma PearlπŸ’-Chelle P.S. I have a sweet GP friend really in need of prayers please pray for her tonight!πŸ’š 
I also just barely finished my j feeds today!!! (Big smiles) reached a goal I didn't think was ever obtainable...

Thursday, August 11, 2016

8/11/16 Awaiting

Missed the call from my rheumatologist for my lab results πŸ˜‘ my phone was on vibrate (idk why it's never on that unless I'm in an appointment) and by the time I heard it I was shoving ivs in my fridge and sitting on the floor. I got to the phone literally in time for it to stop ringing. He left a very kind message though! Too call him back.) I did right away but unfortunately he was in with a patient already... Now to sit and wait and wonder. (He was suppose to be giving me yet another opinion on wether or not I truly have SjΓΆgren's  Syndrome or another possible autoimmune disease... As I have Lichen Planus and One Rheumatologist years ago that's very well respected in the valley diagnosed me With SjΓΆgren's when I think when I was 20? Maybe younger? Then I saw a million rheumatologist (who scratched their heads) and went to another amazing rheumatologist who is also well respected and he said nope, I did have both autoantibodies for SjΓΆgren's (A&B) but my inflammation in my blood was normal? I was on my immune suppressants for a long long while at that point... And my ANA is always back and forth.) so since then months before being diagnosed with POTS I have let it all be! Of course thinking its POTS but now my other docs have been wanting a definite answer. ... (So they can better treat me as a whole) I assume from experience something is up with this new doctor and my labs or he would just have had a nurse call me.... (I had these tests ran maybe two months ago) and I remembered Monday, "omg I totally forgot I had them ran!" So much blood work I got extremely POTSie, idk how I forgot that one!! it was before my feeds fell apart and then my tube fell out, the virus, the surgery, the crap I endured last week. Now I'm back. I'm taking a break in retro spect. But you can't just let everything fall apart at the same time. I have let so many tests and stuff just go away. I am ignoring them now. I hate my feeding tube but I'm like as long as it works I am good for now (that's how sick of being sick I am)... On a brighter note I was just singing and swaying and Wrecker danced with me... He will come and dance with me it's hilarious & so sweet but hey we were happy! I have no notes or singing talents, for sure.
I painted my finger nails!! )that's big for me these days. I decided so what if they get all chipped and icky? I should do something for myself once a week! So I am attempting to paint my nails weekly now. Toes get painted but I don't do fingers due to all the hand sanitizing and washing I do with all my medical care. (But hey if it makes me happy) . XO, HUGS, & LOVE-Chelle 

Tuesday, August 9, 2016

Today is Great. Today is Great.

Today is Good. Today was Great. And my title was going to continue with today is the 8th but it is the 9th. Rats! Haha... I am obviously feeling much better today!! And I really hope it stays!!! (Knock on wood and fingers crossed) my pcp appointment went really well!! (Big smiles) my weight is down a lot but I had a mean summer (full of set backs) but here is my BIG NEWS for the first time in years I haven't taken nausea meds in days. DAYS!! What!? I have been on the highest doses 24/7 every day for years... Idk if this is going to last or be a new thing. My feed rates are improving like never before. I am not loosing my gj tube by any means and I will never be cured of Gastroparesis but I have an opportunity knocking at my door (possibly) and you bet your bottom dollar I am going to give this window of opportunity my very best shot! My pcp was super shocked by all this (I am too)  and I was all, "I am done with my feeds and it's like 1p.m.??" Her reply was "seriously? Well hey you get a break from being chained to a backpack for the afternoon!" (Which yeah that's true) but then I was all, "well can't I start putting fluids in my tube after feeds? Instead of having to use my port for IVS??" I would actually prefer 24/7 feeds if fluids are included and no IVS and port being accessed always." And she was like, " oh yeah!" (She totally agreed that would be better for me too)... "Are you sure you want to be hooked up all the time." Me: "if it means I don't have to have ivs every night and always am accessed port then yes." (I have been hooked up 24/7 from the dirst day of tubie life... I would take a gj tube over a port any day) it's all a trial and there are things that have to be met and if all those things go right we still have a mountain to climb.....it's gonna take time and my body could be like oh, never mind I don't want to work anymore....and that's just to get off ivs... But it's fun to think about.! They wouldn't take my port out (let's clear up some possible confusion ports are surgically placed basically little circles and they have a tube that goes up the jugular vein then goes by your heart in a main artery. All under the skin. They then stick a needle into the circle and it's like a Iv that lasts for a long time (unless issues occur) it could  be for years. But when that needle is in the port. It is an infection risk for a blood infection called sepsis and that is deadly. It has to be sterile procedure when they put the needle in and cover it then you have to keep it dry and very clean... You would probably know a port as the things cancer patients have in their chests to recieve chemo treatments) and I would have to talk to my neuro if all goes well... That's if I can even pull phase one off... But it would be SO cool!! I wouldn't have to stress out over sepsis or tape a ziplock to my chest every time I shower!!! And it wouldn't hurt when I slept in it wrong!! Now they'd leave my port in... It just wouldn't be used every day. (Accessed. No needle in my chest) It's only a infection risk when the needle is in the port reffered as accessed! I don't have appointments like these often so I am just going to enjoy my moment of excitement, goodness, and sit here and reflect the blessings I have in my life. Even if all this big idea and new improvement totally stop tomorrow and that switch goes back to where I was... I am always going to be grateful for this day and the happiness I feel today in my heart. I had a horrid past while, it's worn me down. But it shows you never know what tomorrow will bring. Maybe I won't get off ivs... But there is a possible chance on the table for the very first time! I am still taking a medical break this month. (Does this show how you can not fully take a break in chronic land) but my breaks means no specialists. No procedures. (Unless I absolutely have to) I'm taking a break. My doctor even agreed it was wise. You can only fight for so long. It's okay sometimes you have to take a step back. Don't give up the fight just rest for a bit and recharge those batteries. Especially if you have gone through a particularly hard time. (I have taken medical breaks in the past, several times. They always help) I truly advise them. I hope everyone is having a great day! If you aren't I am sorry and I hope better days to come! Hang tough. We can do hard things XO & HUGE computer hugs-Chelle My First attempt @ https://youtu.be/N4Bkh8oz9e0

Monday, August 8, 2016

Gastroparesis Awareness Month Folks! 8/8/16

Hi everyone I am feeling much better today (obviously no make up and stuff states I am not great but I am good in comparison.)
So, with all my healing from surgery and chaos I totally forgot we were into August... which means two things A my Sissy's Birthday!! (I hope you had a great one) and B that it is Gastroparesis Awareness Month!! (A link if you want to learn more or help Gastroparesis @ https://www.g-pact.org/gastroparesis ) What??! Where has the time gone?! I think that clears up how sick I have been feeling.Because if you follow me you know how glued to this internet thing I am! If you haven't seen my latest update, I am doing well with surgical healing. I have been off pain meds since, last Wednesday! Phew! Just Tylenol and ibuprofen for this little woman, I was on such a high dose of pain meds post surgery... when my pcp told me I seriously couldn't believe the dose!! It was many time stronger than morphine. What!!??? I don't think I honestly would have let them send me home on that if I knew about it. (They did nothing wrong) I just don't like to take that strong of medicine. Ya ya if you have seen my posts I have a million medications I take but let's be rest assured 98% are for POTS, thyroid, kidneys, autoimmune diseases, ( regular stuff that's not McCrazy drugs) now sometimes I do take some pain meds at a very low dose and some meds I take for my POTS are in fact anxiety medications or brain altering meds... (Like anti seizure/nerve pain) But my brain is sick... (Not physchologically, neurologically... My  autonomic nervous system is malfunctioning) and they put me on them for POTS issues like for instance my heart rate was always 160bpm resting and up to 260bpm just standing up... Obviously they had to do something about that or my poor heart would get worn out. I do wish I could just throw my medications in the trash some days but it would not be wise or helpful. I need the treatments I can get. Every choice I make isn't easy. Sometimes there is no real option you just do what you have to do.(like putting forgien objects into your body like a feeding tube and a port a cath)  But I have had many days full of wonder and thoughts of if I made the right decision long term. Or if I don't do a treatment how would that effect me long term? It's a catch 22... And now we will talk about Gastroparesis awareness. I have Gastroparesis (GP) due to my (POTS or Dysautonomia. Whatever you want to call it) I had both for many years and I could eat but at one point, I basically lived off cheez-it crackers and a few bites of a meal a day. No Gastroenterologist knew but majority called me crazy, depressed, young, anorexic, hormonal,  attention seeking, wasting money, that I should never step foot in a doctor's office of any kind again, one diagnosed me with panic disorder even (that one really tried and cared. I think he knew I had POTS as he was a neuro too. Looking back he warned me that I would be full of tubes of all sorts of I didn't get help. Yet, what he did was not the proper help for my condition) I lost him about a month into treatments due to him having a medical (stroke or big heart attack I am not exactly sure which one and he retired immediately) then I was reffered to a psychiatrist and to a counselor. (For the wrong diagnosis of an anxiety disorder. A little fact here... almost all POTS patients are wrongfully diagnosed with an Anxiety disorder before finding a correct diagnosis of the neurological condition POTS as it seems like anxiety to an untrained eye. Plus anxiety meds will typically serve some type of improvement in symptoms due to our autonomic nervous systems not working right. Not because we are anxious or "crazy" but because it helps calm the nervous system a bit. However it's not going to cure or help us we have a lot of retraining the body things that have to be done.) So of course if a doctor writes you a script for an anxiety medication and you see the slightest bit of improvements viola! They think that's what is wrong. (Studies have even shown the past few years that physciatrist's offices are turning into a dumping ground for a lot of patients with neurological disorders due to misdiagnosis. Luckily in my case after months of counseling and treatment with no typical improvements along with in time knowing me and not quite meeting the criteria, they told me to pursue a diagnosis that I was differently sick. I did stay and learned coping skills and stuck with it (as most patients with POTS do. In my humble opinion we deal with a lot of disabilities and that's hard so we get  help to deal with all this monster condition that no one knows about. Most doctors have no clue what it is. I am constantly explaining what I have. They don't even know the name. And it's legit complicated. I know you are thinking that It's new or rare. Actually it's just rarely known about. It's been around since the civil war (they think civil war syndrome was actually POTS) they assumed back then younge men would go to war and from the trauma they'd get this condition. However with time and back home in a calmer environment some improved and some did not...Teens and pre menopausal women are the highest risked patients upon when they "get" their pots or it shows itself. They don't know a whole lot. They do know if more doctors knew and diagnosed it sooner than 6 plus years on average a lot more POTS patients could go into remission with treatment and live better qualities of life (now that's not every single case) but they are linking that together. Wow this turned into a POTS awareness post. Okay back on track! Due to all this POTS I have Gastroparesis. From  what I have learned you can have idiopathic Gastropareis (meaning they have no clue why it happened, it just did.), neurological (my case), and diabetic Gastroparesis (a secondary from diabetes, again they don't really know why this happens in those cases sometimes.) a lot of Gastroenterologists won't even treat it. A lot don't know how to test for it. Which the test for Gastroparesis is called a gastric emptying study...(I had a MRI showing my whole GI tract spasming years before I knew I had GP a clear indication I could have a motility issue. That doctor told me to go somewhere else and call him when I got it figured out and gave me Bentyl (which I still use and helps) p.s. I did call him back. Post my gastric emptying study that clearly stated I tested for slow motility and did in fact have Gastroparesis. My specialist (who specializes in this very thing was like, "oh you are okay.") I would have believed her if my nutritionist had not hours before accidentally reveiled to me I had Gastroparesis (she didn't know I hadn't gotten the results yet) this was after not eating for three months even a sip of water came back up. All I did was throw up. I did get three ivs of normal saliene per week. And that top notch specialist ignored me even when she knew I was dropping weight, not eating, had slow motility (GP), I even begged for blood work to really check if I was truly nutritionally stable as she said I was. She wouldn't do anything for me. I cried for hours after that appointment (you get crabby and more emotional when you starve) I came home (severely googled Gastroparesis and the guidelines for diagnosis and the board of the gastric emptying test clearly indicates I have Gastroparesis) and saw my new pcp who I explained all this too... she looked it up too and  immediately put me onTPN nutrition via Iv form. Basically I was feeding my organs and I didn't use my GI system at all!  We did it to save me and to give me a few weeks or so to find a new GI to treat me. To our surprise that want so easy...(And put in a gastric jejunal tube so I could feed into my small intestine and get nutrition by bypassing the stomach and still using the rest of the GI tract. I called at least over 30 GI offices in the state and repeatedly was told "we don't treat that here." When I would ask why every time I was told, "that the doctor or doctors in that office just didn't want to." I couldn't believe it. I had no one to give me a tube and most importantly no one was willing to treat a serious condition. (well I found one crack and he was so jacked up, he was not touching me) There isn't adequate treatment for GP you can take nausea meds, meds that are suppose to speed up the speed of the gastric emptying which are mostly not FDA approved and you have to get them out of the country, (they for some reason worsened my case. I assume it's because I'm neurological), you could get a gastric stimulator,  then some have (they are starting to not do this now and it's more of a thing of the past but they remove the stomach), you can go on the GP diet and if you fail that diet (there are two GO diets low fiber/low fat/small portions or all liquid) if you fail you get a feeding tube. (Basically)  A lot of people die because of Gastroparesis (even with tubes of all sorts) sometimes they never even get diagnosed. That is so not okay! (Luckily due to a friend of a friend I got in with her GI as she asked if he would give me a gj feeding tube (he agreed) he is brilliant (he took my case and treats me as he actually doesn't normally do these cases with his very special speciality... He is 1 of 2 GI doctors in the country who can preform a special procedure for pancreatitis) and I still see him to this day and we get along great. I love his out look and he isn't super dry and he gets I am young. Plus he jokes around which I love when doctors aren't super serious. But they do have to be serious enough too. (However if they are blunt and OCD I really like those types too.) I guess bottom line they just have to have legit compassion and be real with me. Gastropareis is scary and I am sick and tired of seeing people I know pass away. Seeing them get so sick and literally starve to death. STARVE! I know Heavenly Father has a plan for us all. We all go through trials for reasons. I know we are here to be trialed and tested for the next life... I believe when it is our time to pass it's God's timing... He takes us home. But I can't keep watching person after person have so many complications, have no quality of life, live in beds, have others raise their kids, live in hospitals, look like skeletons despite all their efforts, enter hospice before they are thirty. Then pass. We always say in the GP community when someone passes that "another angel earns their wings"-that's true they do and it is typically a few per week. Most are very young...but I feel with the world we live in we can work on better treatments and give people quality of life. Let us eat real foods not live off formula and ivs... Not be told how crazy, dramatic, anorexic, Ect we are due to a lot of pure ignorance in the medical world. I know the world isn't perfect and can't be. I understand doctors are human too and simply can not know everything but there are many Gastroenterologists in this world turning their heads to Gastroparesis because it's not  easy  to treat and has not a "cure". We live in a society of brilliant people. More can be done if people even are aware but a lot aren't. I don't write this to feel sorry for me. I wrote this to give knowledge and hopefully save lives, help others get a correct diagnosis, and hopefully let others endure less sufferings. Gastroparesis is mean and rotten. Let's help people not starve anymore. Sincerely, -Chelle  here is the link to my YouTube video I made last year for Gastroparesis Awarness month...of my experience of year one with Gastroparesis diagnosis... view here if you haven't already or want a refresher  @ https://youtu.be/sM27ewIDtnI

Sunday, August 7, 2016

8-7-16

This is a photo from the day before surgery (post surgery I have looked like a hobo) and i think the face sums up how I have been feeling... #seriously #thinking #iamkindasickofthis 
I hope everyone is having a good sabbath day! I haven't been up to posting and I may be posting a bit less in the near future. But I wanted to write an update while I feel up to it... I am fine... But sometimes I need what I call a "medical  break" luckily I have until the end of the month to go to post ops, clearance appointments, neurology, and then I am suppose to restart physical therapy. Basically I will be going to the valley more for more treatments. There is no time frame for therapy it all depends on my body and how it responds. Once a trauma case always a trauma case. However it's not nearly as bad as before. (It shouldn't be with treatments and monitoring) but for now I am taking a medical break for me. That doesn't mean I won't be taking my meds or using tubes or any of those things. Those aren't choices...it just means less doctors and procedures for at least the next month. (Fingers crossed, it's not exactly in my control) I will probably blog I want to... Sometimes I have to step back and take a breath. This summer was tough. My feeding tube had a hole so it would back up and my feeds got very low... This didn't show in x rays. My GI was flooded with cases (he is getting help in September), my tube then fell out at home so I had to pull it (doc instructions) which means my stoma had to be recut, I got a new tube but my feeds were low for so long that it caused refeeding syndrome and I basically had to restart my feed rates from scratch. Once I got to an okay amount of nutrients and felt a bit human that way... I caught a really crappy week long virus, I was well for a week then went in for endometriosis excision removal. (My neuro and I did have a big talk if the surgery would be worth it or not with my POTS... He said do it because pain makes my POTS worse and if I kept living in so much pain my POTS was not going to improve. In fact it could drag it down further...Plus it is not okay to let one disease run rapid just because you have another disease.) Mean while I also suffered from daily migraines that they couldn't control. We found a med that works and honestly the odd part is when the monsoons came they improved on their own. (Normally the monsoons kill me and I have them the worst during those times) I still have them once in a while but not so badly. I had a hiccup post surgery not exactly related to the surgery and I will be totally fine but I need some time to heal. I just need a Michelle break. So that's what I am doing. Obviously I can't stop it all and just take a vacation from it (that would be nice though haha) but yeah a little less chaos would be appreciated. I am even putting my feeding tube replacement off until September (unless it clogs or breaks or something). So for now my goal is to get back on my feet and take a break. My main focus is now nutritional as I am eating a bit more by mouth. (Not loosing my tube by Any means)  my biggest goal would be to get my feeding rate high enough and (a seperate situation to make my kidneys more efficient so I only would need 1 liter of fluids per day.) but it effects my nutrition...  Right now I can not get formula and hydration (why I have the port) but my hopes and dreams today are to get that rate up with my new formula to where I feed 4 times a day and run fluids via feeding tube in my sleep... That may be a dream but I am feeling a stubborness that's stronger than normal. Which is a good sign of a good fight but I will take any improvements. I realize I can not control my diseases but This girl tries super hard everyday! These improvements can always change in the blink of an eye. But for now I will push the GI tract a bit and sees where  it takes me. It's a lot of learning dietary (I know some from the beginning before I was tube fed and I was eating baby food to try to not get a feeding tube but I failed these Gaatroparesis diets even the full liquid ones)... But a point to make as even if I ate 100% it's a very different diet. I will always need nutritional support with Gastroparesis. But I will be happy to eat at all. Because there was a a day I could not even have a sip of water. When I slowly improved with eating by mouth I was afraid people would think I didn't need a feeding tube. (I can see the confusion there. I myself thought before Tubie life that a feeding tube meant you wouldn't be able to eat at all only by a tube... And some can not eat a bite of anything or a sip... But here is some feeding tube awareness some can eat a little and that's great! It's all nutritional needs.)  I have a new perspective this week. I have been very blessed these past few weeks and though it's been extremely hard. I feel I have been trialed to the max. I have learned a few things from them. Like I always say trials bring life's biggest blessings. Always stay strong, keep pushing, reach for the stars, never give up, & know how much love our Savior has for you! I'm so tired today and I will be slowly getting back on my toes again. Keep up your fight whatever it is. You have great purpose!!-Chelle 

Monday, August 1, 2016

A Step at a Time

When you have a long bad day and you get a clean cut answer to a prayer. I've watched this video many times. http://www.mormonchannel.org/video/mormon-messages   But today it was clear as crystal. A different experience... A different day. A different me. I believe I acted on a twig of faith tonight and it grew. So simply, You listen. Get back up. And brush yourself off. Then try again with the savior on your side. Those moments are when you flourish in this life. -Chelle if you too are having a bad day remember it has been with the best if people who ever lived. They had tough life's too. You are never alone. Heavenly Father loves you so very much! Stay strong. Remember we can do hard things!! https://m.youtube.com/watch?v=kxCL1JdWuHE