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 😉 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!!! 

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 

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!💚...

 MOST importantly, Today I had the opportunity to see my sweet grandma Pearl💗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 😉😘 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 👍🏻(@https://www.bonfirefunds.com/brooklynns-warriors ) lots of love! Go hug your grandmas if you can! Love you Grandma Pearl💝-Chelle P.S. I have a sweet GP friend really in need of prayers please pray for her tonight!💚 

I also just barely finished my j feeds today!!! (Big smiles) reached a goal I didn't think was ever obtainable...

8/11/16 Awaiting

Missed the call from my rheumatologist for my lab results 😑 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 Sjögren'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 Sjögren'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 Sjögren'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 

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

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

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